Lovely bloody message. She was a total fighter and always thoughtful and appreciative of the time she had, loved her holidays and wee family which I lost track of how many there were.
In the sadness and frustration we had loads of giggles too and you've just made me laugh about the god hair, that cheered me up that day xxx sleep easy buddy xx
Couldn't have put it bloody better Lily. We share a great sadness with the loss of Nicky.
Can't say more except what a great lady, and buddy friend Nicky was xxx
in honour of our much loved friend I am going to do one of my favourite bloody posts.
I was bloody lucky to meet up with a group of bloody fantastic bloody girls who all shared one bloody horrible thing - bloody BC. One of bloody fantastic girls in our group from the word go when i posted, was a bloody fantastic girl Nicky. She became a bloody good friend to all of us and we sailed through bloody chemo together, or the bloody dark hole as we referred to it. We had bloody good laughs through this such as shaving our dogs to stick hair on our bloody bald heads . Nicky had a bloody good idea to see how fast she could bloody drive in he favourite little bloody sports car with the bloody top down to see how fast she could bloody drive without her bloody wig falling off. We had a bloody good laugh that bloody time and laughs and sadness was bloody shared as we kept each other a bloody float through thick and bloody thin. Bloody posts always gave a bit of bloody light bloody relief. How many bloodies could I get in a bloody bloody post? One a bloody moderator bloody told me off for saying bloody. ha ha. Nicky and I met up. I remember her daughters being worried she was driving to meet a total stranger and her saying Lily please don't be an axe murderer? I also visited her at her old home and she was bloody amazing.
We have lost so many bloody fantastic people in our thread to this bloody disease but we bloody salute them all. Bloody Carole, bloody Lisa and bloody Lily - we soldier on, remembering or friends every day.
Fight on everyone xxxxx
Well hello buddies. This is the first time for a couple of weeks and I'm on my phone so won't type much.
Nice to hear from you Lily, like you I was beginning to think we would never chat again.
My mum has been pretty bad with dementia for about 8 weeks. She was started on a dementia drug, and improved then the stupid home stopped giving her it. Consequently she's even worse now. She wants to go home, and can't understand why my dad hasn't visited, and won't believe he's passed away.
Hope your YD is coping ok whilst waiting for results, and you get treatment for your eye.
Nicky sending lots of hugs hope you're doing well. Lisa where are you? I don't see you much on Facebook.
After this experience with the forum maybe we should exchange email addresses or something, what do you think? Well enough from me take care buddies, it's good to be back xxx
Hello everyone. i hope Nicky and Lia get back on here too. I was so disappointed when I thought we had lost it all. No news yet for my daughter but the stitches are out and nobody else can notice the scar already. Hopefully that is it. I am at the hospital this week for a lump on my eye, shouldn't be serious but I am hoping they will remove it, as anything growing worries me. My oldies are good still and my uncle has been offered one of the first covid vaccines and I could have taken him tomorrow 8 Dec but I can't get off work at short notice so going at the weekend instead. We had literally dozens and dozens of choices for every day going forwards, very encouraging to see but Mum is trickier as we can't get her out. I am very pro the vaccine and will have it for myself as well as everyone else I might pass it to if I don't. I always follow health advice so wasn't a difficult decision for me. I won't be surprised if some countries don't let you visit without proof of it once things settle across the world. Time will tell how it all goes. I once met one of the first ladies who volunteered to have chemo. I can't imagine how much we all owe those brave souls who knew they could die. It had an impact on me thinking someone did that for everyone coming after her. She was ok too 🙂
Carole glad to hear your hand op went well and keep up those exercises to get a much mobility back as you can. I think the early days count. Yes very chilly and a lot of fog here, making driving in the rush hour quite tricky. How are you manging with the dogs and everything to do with your hand out of action?
Lisa I hope all is well with you. Nick I hope things are going well with you too and that you have been able to get all the next treatments ok. Hope to hear from you all soon love Lily xxxx
Hi Lily et al, I've had big problems too so just a quick post to bring us back to the top.
Firstly I hope you are coping with life as it is? Nicky how is your treatment going?
Lily has your daughter got results from biopsy? Sincerely hope all is ok. Hope all your oldies are coping ok?
Lisa how are you getting on, are you still able to work from home?
My hand op went well, 2 tiny incisions on the palm of right hand. I'm having physio to try and reduce swelling and enable good movement of my fingers. Fingers still a bit stiff, but I keep doing exercises every day throughout the day.
YD had another course of ABs and the groin node seems to have gone. Thanks Lily for information about cat scratch infection.
Weather here is now cold and wet. Until today it's been glorious during the day and frosty overnight.
We're still in lockdown, until 15 December but I'm not complaining. Just hope this virus dissipates through the winter. Anyone interested in a vaccine when it's rolled out?
So, hope this posting brings the thread more easy to find and thanks to moderators for helping us out. Take care and love to everyone xxx
Hello everyone, I hope you can get back on here. I was completely trapped not able to get to the end of the post and sent a help post for somebody to sort out. Three cheers I am back in now, although when I click on our thread it has gone wrong now. I am having to come in through the bell sign?? Thank you whoever sorted the order out 🙂 Lily xx
I am hoping this will take the post back to the end of our thread as it is back to day one and you can no longer jump pages. This is very annoying please change this system
Hi all, something has happened to the forum again! It's taking me back to posts from 2009 instead of 2020!! Hope you are all doing ok with current lockdowns? Weather has been nice here for a few days, bright sunny skies. I'm not looking forward to my hand op but by this time next week it should be over. Before that I have to take a covid test on Tuesday, not looking forward to that either. Anyway enough from me, just posted really to try and bring the forum up to newest posts. Take care love Carole xxx
Hi all, really sorry I keep forgetting to log in. All okay here out town was in tier so wasn't too bad but numbers increasing at Sellafield and other areas. Wish he'd gotten his act together earlier and done lockdown. We have mams 70th on 17th so had to cancel wee trip and get together so had a quick one night before lockdown with kids. Its hard eh my dad keeps going to supermarket so getting a telling off. We had booked a break to tenerife early December as numbers so low but looks like thst will be off due to testing, which if can get it sorted is a great idea. I've worked at home for 7 months now it's hard work and work long hours. But least still working.
Lily must be hard when get positives in class even with measures in place it's scary. I've had a friend whose worked on cocid ward from start don't know how she's done it.
Carol, what a worry about your daughter but glad it's sorted and ouch re op sounds painful x
Nicky lovely to hear from and glad your appointments are going ahead. Really hope the drain helps to get rid of the fluid, it sounds really uncomfortable xx
Take care all xxx speak soon x
so good to hear from you. Nicky I do know exactly how uncomfortable ascites is, having watched a friend be constantly drained, sometimes 2 litres and having to have a large range of sizes of trousers to accommodate the expansion. She was very annoyed if they would not take her in and made her wait, as there are restrictions I believe but cannot remember why. Hope they don't keep you waiting for long and can provide a solution apart from draining regularly, meaning more hospital visits and needles grrr. How lovely that you can see the girls from her moving in, brilliant plan. You have to be inventive these days or break the law so easily. Victor is on the case and not budging from the exact rules so squeaky clean. I am worried about Christmas but buying online like crazy to make sure the littles all have parcels to keep them busy. have you all started yet?
I have had a worrying week, having had a positive sitting in my class for 2 days before a random test showed she was positive and asymptomatic. I didn't take this well at all and felt upset and worried for my extra vulnerables. Not everyone was sympathetic and that was even more upsetting that my feelings weren't considered. I am still teaching and don't even get a test due to distances, etc as the school is really strict and rooms measured for safe distances even. So I have a huge number of my class in quarantine and I have to try to teach them as well. So even busier really. It won't be the first time this happens so maybe I will be calmer in future.
Carole glad they found out what your d had. I don't know anyone who ever had that. I googled this and wondered if it was a flea bite. rather than a scratch?
Sorry for absence, I never seem to get around to updating on this thread, just give out advice and support on the secondaries board!
Generally lots of appointments and things going on to investigate fluid build up. I am hoping to have a drain done next week which should ease things as it is now getting quite uncomfortable. Luckily our hospital seems to still be accepting patients for more routine procedures and not shutting everyone out like some seem to have done. As ever the oncology are being brilliant and being available to answer any questions by text or phone call. Face to face appointments are also being used. So, we soldier on......
Yes, Carole, we’re all back in lockdown again! We didn’t get into any of the Tiers which were more restrictive (like Lily did) where we live so didn’t have a week or more of limitations prior to lockdown so still had our freedom. My brother lives in the Bolton area so had been under strict limitations for weeks ahead of the rest of the country. I am not being shielded this time, as other in the ‘extremely vulnerable’ group were last time, just to be extra careful and make some conscious decisions about what and where. I have resurrected my Tesco deliver slot for the time being but did go out to the smaller supermarket near us on Thursday, the first day of lockdown. It was completely deserted, with just me and one other shopper in it, what bliss, nothing like the queues of people last time (according to what YD used to tell me when she did my shopping). If it stays like that I will go occasionally for odd bits but wouldn’t queue or go in if it was busy, after all we’re wearing masks now and all seem to be observing the ‘keep your distance’ signs.
YD has come out of London again but this is more down to not being able to work from home rather than any other reason. In lockdown 1.0 she was furloughed so had nothing to do in London and came to childmind our grandson, who wasn’t at his own childminders. This time he is (thank goodness for all concerned) and she has a full time job. She’s staying with her sister again as they have space for both of them to be able to work from home. It means we can also see her (plus our other daughter and GS for walks - separately of course) Let’s hope it’s only for 4 weeks!
Hope you are all coping, whatever life it throwing at you.
Hi all, here is hoping you are all doing well with the current lockdown, we are also in a lockdown which started a week before yours. We're in the middle of the countryside so fortunately we can go for weeks before seeing anyone. Today is really windy. Our polytunnel is taking a battering. 🙄
YD was finally diagnosed with cat scratch infection, which is very strange as she doesn't recall being scratched recently, and they think it must have been recent. She was given a type of antibiotic purely for this, which she has now finished and she still has the swollen lymph node. I can see them having to do a biopsy of this if it doesn't go down 😥
Lily how is your YD? Any news yet? How are you managing to teach in the current lockdown?
Lisa I expect you are back to working from home? Remember to take time off and relax sometimes.
Nicky I'm truly hoping you are ok? We haven't heard from you for a while and hope it's because you've been enjoying time away before the closedown this week.
That is about it from me, i'm off to pick up some devastation in the garden from the winds. Have a nice weekend ladies love Carole xx
Hello everyone, how are things with you? I hope everyone is managing to keep covid clear and their loved ones too. We have not had a positive at our school yet but there are occasional cases in some other local schools. I am keeping my fingers crossed that it doesn't suddenly overwhelm our area.
Nicky you haven't posted for a bit and I wondered how things were and whether something more had been found out about the fluid. I hope all is ok but keep you keep popping into my head so I hope that is for good reasons. Hugs xx
Lisa are you still in tier 2 or have you got tier 3 now? There is so much illness and infection in parts of the North, hopefully not right over your side. Its horrible not being able to plan much isn't it? I keep thinking about if I will be able to see everyone at Christmas or not. Number 5 had his 6th birthday and we just had to stand outside and its pretty chilly and rainy this week. We have ordered a gazebo and outdoor gas heater so they can come round still. Hoping that will help manage the outdoor temperatures.
Carole I am sorry you are heading for another op but at least this one will bring you great benefits and more movement in your hand. So sorry about your daughter, any news yet? I wondered if she could have glandular fever as that makes glands swell a lot. I hope she is getting sorted out and its not anything bad. Its quite a wait for my daughter's biopsy and although she is going to a private hospital to have it done, there was an even longer wait for the same hospital if she used her private insurance?? She is ignoring it but the isolation from being able to sit at our house is making it more difficult. She likes to eat here twice a week in normal times, hence the gazebo. I think i just became an outside cafe.
Better finish here as watching a film and they are moaning as I left it on pause. I did my big Christmas shop today. I couldn't get as much as usual as my donkey ie Victor said he had a work crisis and couldn't come!!!! At least I have made a start. Take care all love Lily xxx
Sorry I haven’t been on for a couple of weeks, I don’t know where the time goes.
Lisa it’s nice to hear from you and pleasing that your absence is not down to anything serious, like Covid. Hope all your family are well and staying safe.
Lily I’m sorry to hear about your YD and hope that by now she has had results and that everything is fine? Of course we all have worries, because of our own medical histories. Yes I do think that “the twerp” is leaving a lot to be desired. One rule one week and another the next, and for different areas of the country. Do you have to wear a mask at the school?
Nicky how are you? Is the fluid better now? Do they put you on fluid tablets to drain it? Anyway, hoping you are still managing well on the new treatment, which I guess isn’t so new now.
In the course of recovering from my ribs, I had a mammogram, just routine every year. This showed that the muscle is causing me pain, due to the LD reconstruction I had in 2013 and my doctor explained it will never stop, will be with me all my life. Great! I’m having surgery 20 November on my right hand to release the tendons which have become tight causing my finger/hand problems. It’s a LA but I asked for a bit of sedation as I’m such a whoosh. I won’t be able to use the hand for 15 days as it will have a dressing until the stitches are removed.
We have a worry with our YD as just over a week ago she developed a lump in her groin. The doctor thought it was a hernia and sent her straight off to A & E for them to push it back or operate. However emergency doctors decided it wasn’t a hernia and did an ultrasound which showed a swollen lymph node which has 3 nodules on it. Then a few days later there were further developments and so our dr arranged an urgent CT scan, which has showed nothing. During this week my mind was racing with the C, ovarian as a lot of her symptoms could fit that diagnosis. They are purely treating for an infection, which they can’t find as her blood test was normal and no UTI. She’s on antibiotics but if the lymph node remains enlarged they are going to investigate further. Worries, worries, so I understand how you feel Lily.
Our weather is very wintry now and we’re in for a storm, a tempete the French call it, with strong blustery winds. Mr P will avoid it as he is travelling back to work tomorrow. We are busy getting in the summer plants to try and prolong them for next year.
Better get on and assist, love to all Carole xx
Hi, hope everyone is keeping well and staying safe from the virus. Our area has been very fortunate compared to more northern cities and towns so it is very irritating to be moved up to the next tier without actually getting to that level. I know its good intentions but I could just poke the bloke in the eye. We managed to celebrate mum's birthday but one of the gs just misses out on being able to do anything or us to see him easily. They seem to think it is 8 weeks which takes us dangerously near Christmas and so I am starting to shop early, especially as a lot of birthdays before and straight after Christmas to worry about to. Do you even get a big turkey, crackers, anything? I am trying not to think that far ahead but also think I need to as deliveries will clearly go OTT and have long delays as we get closer. How are you all feeling about it all? Lisa is there much in your area? It was lovely to hear from you. The cold weather has shocked me into diet action as I realised none of my dozen work trousers could zip up comfortably and I can't stand being cold. So I have just reduced things I eat and it was enough to help the zips within a week or two, so might keep going and not have lunch lunch any more. There really isn't time when at work anyways so that solves 2 problems. Work is manic but I'm getting used to it. Its not much fun being a teacher and running the risk very day but you get used to it or you have no pay.
Carole has the pain from your fall started to ease at all yet? I am sure the cooler weather will not help you either. I as listening to a dr who said covid is at its peak at 4 degrees C so everyone should have their houses warm. Suits me. Have you had all the rainy weather we have had? One extreme or the other for us in the south but at least the lawn is green again instead of burnt beige.
Nicky how are you getting on now? I wondered if you had any further information about the ascites and what is causing it. Do you think it is building or is it staying pretty much the same, that would be nice as it can be uncomfortable and annoying. I hope all is still going well with your tumour markers and the treatment is being kinder to you. We have had a worry as yd insisted something was wrong with a small mark on her face and after going to the gp and hospital, which we thought would be fine, she now has to have a biopsy and stitches to check it. That was quite a shock and so we have that hanging over us. She never reveals much in these situations so I just took her out for some retail therapy afterwards and hoped I had helped a little. She would normally come here a lot but the stupid twerp putting us up a tier mean she can only stand in the garden. So annoying when you still go to work with 1200 germy people every day but can't see family. Better stop here as you can probably tell I'm not happy about it. Hope things are good with you. Love Lily xxx
Hi all. So sorry I've been missing in action. 6 months of working at home is taking its toll as I don't tend to switch off although I'm managing to eat and drink for the whole of the country I think 🤔🤔
Catole, ouch ouch re your ribs sounds awful and I bet its a real struggle.
Nicky so sorry to hear about your build up of fluid but it's also a relief thst your results are showing favourably so hopefully nothing untoward. Cornwall sounds like just what the doctor ordered.
Lily, the dentist word I don't even want to get the details and I bet school is hard work too. Let's hope things get a bit more under control before Xmas....
Will try to be better at keeping up and just tweaked my notifications which always gives me a wee reminder to post 🙄😳❤️. Take care all xx
Hello everyone, how are you this week? I am sorry to have been away but I seem to have a mix of horrible dental surgery, run off my feet at work and just not really feeling myself. I am going to reply to Nicky's post first or I will never get round to anything! It was like my reports to parents - sandwiching good and bad news, in your post. The trip to Cornwall sounded wonderful and so pleased you managed to time it for the better weather. I really want to head that way to the Eden centre some time. Have you been? I am really missing my holidays which recharge my batteries and it should have been the best year for holidays but no luck there. The idea of not having everyone together at Christmas is making me feel really disappointed but we try to be creative and just about everyone gets her, just not at the same time. I loved being at home and think I need to look at finances regarding reducing my working week or something. Maybe after I finish paying my £3000 dental bill and finish the treatment. The last 10 days have been uncomfortable again and just improved in time to go back 😞
I didn't realise how much time had slipped by so Nicky my apologies. what did they say about the ascites in your abdomen? Any news or will they try to track the cause. I know it can be caused by the heart, the liver, lymph system and any cancer so a few culprits to consider. i hope it was not bad enough to affect your breathing or make you uncomfortable. As you have not had it drained I am hopeful that it is slight and not requiring treatment. It must have made you wonder if it was the tumours causing the change in feeling 😞 So wonderful news on the improvements. How are you finding the side effects now? Have they eased up much? A well deserved improvement too. I am really so pleased to hear about that. Keep checking on the fluid though as that can be annoying as well as uncomfortable if it builds up xx
How is your mum getting on now? Sounds like your brother can do even less now, so a lot on your shoulders. Do the girls help out? Mine do quite a lot for the oldies which reduces my load while working. I hope your GS had a lovely 3rd birthday, time flies. Our newest gs had his first birthday recently. Surprisingly he has the biggest mop of golden blond hair despite us all being pretty dark haired.
Carole I was so very sorry to hear about your accident and it must be terribly difficult to look after everything while Mr P is away with the broken ribs. It is supposed to be extremely painful, poor you. Sounds like mum has progressed a little more. I was told my uncle will be the same for a while and then suddenly change. I figured we might have reached that point when he told me the gy... had stolen his milk. I said I don't really think so, why would anyone steal it? He said I was shooting out the window at them with my gun. Arggggh. Fortunately he does not have one and was thinking of when he was a child!!! Mum is 89 soon and was told by a relative that she would die at 89 and not make 90 because nobody in the family does!!! Really not helpful and she is now obsessed by this fact and thinks it is imminent with her birthday looming. So they are keeping me on my toes and the family now spreading their visits to single groups is lovely but eating up the spare hours in the week. Lisa hope all is ok with you too.
Work is so difficult at times and you constantly get caught in large crowds and can't get away. The safety is very good but standing so far from every student you can't see any of their work, makes it so much harder as we all bellow at each other and try to go over problems. I can only sit at my desk if I get there early enough before the maximum quota on the door means I can't go in 😞 We all have different lunch times so I never really see the people whose company I enjoy most and would ask if I was ok or take an interest in things I have going on. Tough time to be cannon fodder in a school. Sorry its a moany post but its physically really challenging having to carry everything everywhere as teachers now have to change buildings every hour and I'm not supposed to carry much weight in my right arm. Achilles tendon is complaining non stop too so feeling rather old and worn out lol. Will be back when I am less fed up. Hugs. Lily xx
Ouch, ouch, ouch, poor you 🤕. And so difficult to do anything about the broken ribs, only painkillers . Look after yourself - and keep your eyes open! As to your Mum there’s been lots of reports, and anecdotal experience from the public, about how people have got worse in lockdown so I do think it has had a detrimental effect. I do hope the anti anxiety drugs help your Mum and she stops fretting so much which, in turn, will help you and the rest of the family.
Cornwall is lovely, I’d never really been there other than a few days holiday when the girls were young but that wasn’t so far down and on the opposite, busier coast. The scenery was very nice so even the drive there was easy and interesting. Lots of coves, small ports, quaint villages - no wonder it had been heaving with holidaymakers a few weeks before when the schools were still off. As it was some places were busy anyway, far more people than we even see in our own village so the residents must be fed up! But you could find quieter places and we did get to see some landmarks and gardens that we wanted to.
The weather has also changed here after last weeks glorious last spell. It changed on Tuesday, just giving me enough time to dry all the holiday washing! Now it’s wet and very cold (at night especially with about 5C here). I will be packing away my summer stuff as well, shame I’ve not been able to use half of it as we’ve not been abroad all year 🙁
HI all, Nicky it sounds like your break to Cornwall was very nice and glad you managed to get away. I don't know Cornwall very well but have been to Bude. It is one of the places I would love to retire to.
Lily how is your new working regime going, are you doing ok? Our teachers here have to wear a mask all the time.
Since I last wrote YD is a supply teacher for 7 hours a week at one school, and a supply teacher for a few hours at another. One of the schools is more like a training college, mostly teaching young male, 18 years old who are doing apprenticeships. Being only 25 herself she is not a lot older than her students. It's going well for her.
I managed to break more ribs by walking into a door frame, it happened so quickly I can't even begin to describe how it happened. Consequently I have been in a lot of pain since and I think this lot is probably the worst I've ever done. The majority of pain is behind the left breast, I've even worried about having a heart attack. But it does ease slightly with the use of painkillers.
Our weather turned overnight, with Saturday being very warm and sunny and Sunday wet, much cooler and very Autumnal. Yesterday I put away summer clothes and brought out the winter clothes. Always a depressing time of year although hopefully colder, frostier weather that has bright and sunny days will soon be here.
No change with my Mum, the UTI cleared but they decided to get her checked by the mental health team as obviously her dementia has progressed. I do wonder if the change in her routine for the last 6 months due to Covid has created the increase in her dementia. She wasn't allowed visitors until a couple of weeks ago, no daily newspapers, rubbish programmes on the tv that she didn't enjoy etc. The mental health team didn't think her dementia was too much worse, but as she keeps waiting to go home, waiting for someone to take her, they were going to give her some sort of anti anxiety drug. We've coped with the repetition for years but the new things are something new. She will be 94 next month.
Lisa, how has work become so busy for you? Are you working from home?
Anyway, everyone take great care, Carole xxx
Sorry for the absence but the main reason was that we went away for a week, yes, a whole week! We went down to Cornwall last week, got back on Monday, so managed to grab the lovely weather we've just had, unlike this week when its gone all autumn on us! We had a fab time, OH got away from the computer and didn't take a single work related call or email which was good for him. Like many others working from home he tends not to switch off so easily and will often reply to things that I think he should leave, especially at weekends and in the evening. We walked a fair amount, a bit to much for my liking as it always seemed to be when I wasn't wearing suitable shoes or clothes! And saw lots of wonderful places having been wise to the fact you need to book ahead of time to get the time slot you want (something we learnt after our trip to Kent earlier in the year). A bit of luxury with the hotels as well (we stayed in 2 places to see different things) as we'd not spent anything on holidays all year. So a recharge of the batteries - all ready for the onslaught of appointments!
As it was I had the results from my latest scan which showed a good picture overall with the only slight downside being that I have some fluid buildup in my abdomen. I do know this can happen, after all our lovely Lorraine also had this, but need to find out more about when it happened ie was it before the new treatment kicked in or not. So a few messages to my BCN during the week and I have an appointment next week to check it out. It does cause some discomfort and was worse when we were away probably down to changing our eating habits so I do want to get it sorted. The overall results were good though with a continued, and considerable drop, in tumour markers and liver mets reduced. A relief as I was convinced it wasnt working as well as it seems and in fact wasn't surprised by the mixed results about the fluid. Anyway all of this is in hand - which goes to show that not all areas of the country are having problems or delays with their cancer services, our Trust has been brilliant with no delays at all and all treatments going ahead on time.
So, what with blood tests, dentist and dental hygienist appointments all booked in for this week it's been a busy time since we got back. Catching up since the lockdown with the dental stuff, but checkups only, plus a hair cut which was planned a while back.
I do understand the frustrations about not being able to meet all the family at once, Lily. We just get to 6 of us if YD is here as well when we meet up as our little family group. However not able, now, to meet any others at the same time. Our GS had a small birthday party this year, can you believe he's 3 now, but did have another one at his childminder with this friends there as they are their own little 'bubble'. Luckily he's too young to want a bigger party and was quite happy, especially as he got to open lots of presents! It was just before the 'rule of 6' came into play so we managed to have both sets of grandparents there which was nice for him.
Well, that's my catch up, hope you are all keeping well - and safe. My brother is in the lockdown area of Bolton so has been under strict restrictions for some time now, so far we aren't having those but who knows?
Would we ever be too busy for you??? AAh good to hear from you. What's going on at work then?
We recently made an update to the default notifications the Forum sends out after hearing from some people that they found the default settings overwhelming. You can read more about this in my colleague's post here.
Hi all, huge apologies for my absence work has been bonkers plus I've stopped getting notifications when people post so assumed you were all busy lol. Will do a proper catch up and read posts when I can keep my eyes open longer. Off to bed as just finished work but long weekend off 👏🎉❤️🎈
Hi everyone, just wanted to see how you all are. Nicky hope the treatments have calmed down so you can keep on this amazing treatment. Any more results from it? Fingers crossed still encouragingly good 🙂
Carole and Lisa, how are you both getting on? Hope all the families are well. Lisa how is self-distancing going at work? Are there many people in the office? We cannot all go in at the same time which is very inconvenient. Carole did it turn out to be a good year for fruit and veg? How are you feeling now? Has the physio helped at all?
I feel quite sad with the new ruling for only 6 people as it means I can't have one of my daughters round. The other 2 are smaller families so can fit in any time. We will manage something but it means they are the only ones caught by the ruling. It had to be the one with 2 children's birthdays coming up as well! Its been another lovely warm day and I wish I could stay on warm and never have to defrost the car again. Work was really tough at first and I thought I might need to just give up as all my foot problems have restarted and so painful to walk. I've been resting them as much as possible and wearing a different pair of cushioned shoes every day to work and that seems to be manageable for now. Will see how long I can keep going. There is not a day or a class where I do not have students off being tested or isolated but no positive student so far. That will change a lot. Well better get off and put my feet up. Take care Love Lily xxx
Hello everyone, how are you? Nick I was so pleased to hear that after a lot of effort and time, they have sorted out the side effects. What a relief and it must have been such a worrying wait as things progressed. Piriton completely knocks me out, especially when given iv. Gets me really quickly too. I had that prickling reaction too, it was all at the top of my nose and quite uncomfortable, so it is called swimmer's nose but after that it goes into a massive headache they told me. Not the kind of thing you want as every symptom makes you double think what it could be 😞 It sounds like things are settling well and are you still having a positive effect on your tumour markers? I used to be so reassured when they dropped even though the consultant tried to convince me they were unreliable for primaries. Have you just got to pack your mum's house up or downsize and get rid of a lot? Otherwise she could pay more and have the whole lot packed and take it all with her. Talking of brothers, its the anniversary of losing mine and mum really rattled my cage and tried to make me feel bad that I had not gone into some sort of dark mood to prepare for the day like her. I totally understand her level of grief but she can't accept that people react differently and I deliberately don't memorise dates of deaths or write them in a diary. Some you never forget but after a while I prefer to think about nice memories of them or think of them on their birthday. So I was made to feel guilty that I hadn't rushed over from work. I was struggling that day and just had to get home and close my eyes. had flashing lights all week which made me feel yuk at times. I took my uncle over to visit her today after doing all their shopping, and mine for the week, also taking my uncle to a flu session for shielded patients plus his check up. She seemed much more responsive at least but its very rare I even get a thank you, despite having to get up really early to fit it all in and get him home in time for his lunch being delivered. Whatever I do never seems to be quite enough. Apparently my brother was absolutely marvellous!!!!! Good for him! Nick I know urine infections make old folk go really weird. Hopefully it will respond quickly. Carole is mum going through another worrying stage at the moment? I sometimes wonder if I will be old and struggling myself by the time I finish looking after my two.
Carole I would be very worried about a snake too as I don't like them at all. I have not heard of that variety, are they poisonous? I hope not. Another condition for you to have to put up with, poor you. I think the condition you had became well known when Maggie Thatcher had it and its genetic so who do you think you got it from? Anyone in the family you remember? I hope they can treat it or would you prefer an operation? I think your diabetes will affect what they decide to do and how bad it is. Is this the autoimmune they were investigating or another different condition?
Sorry its a quick response but its been a long day and work is really hard as my foot pain is back and they hurt so much i just don't know what to do. I think I have the heel condition back again. Sorry its a moany post everyone. Will try to be more cheery. Hugs Lily xx
My brothers are generally pretty good but boy do you have to nudge a man to do - or see - anything! Unfortunately my younger brother lives in the Greater Manchester area which is the centre of a local lockdown/restrictions otherwise he would have been down to visit before now. my elder brother, bless him, seems to think the sole purpose of a visit is to take Mum out for lunch. Which, although very nice and thoughtful, doesn't get the sorting out done! I did leave him a long list of things to do last week which seem to have been done. I have spelt it out in no certain terms that I can't be relied on to help on any given day, whether organised beforehand or not, so they do both know. It's just they live either an hour and a half away or 4 hours away so they can hardly pop in like I can. I'm sure it will be done in time for the actual move, yikes!
As to your Mum, the dreaded urine infection! Isn't it odd how it affects the elderly in such a way. In fact I'd heard about it in elderly ladies but only realised it affects elderly men as well when my FIL had one just before he was re-admitted to the care home. Completely off his trolley until the antibiotics kicked in!
Good luck to your daughter, I hope she gets accepted as a supply teacher and it's nearby if she does.
Nicky I'm so pleased that your awful side effects have calmed down so now you can try and get on with the new normality, of Covid life continuing. Sorry to hear that sorting out your Mums house has fallen to you, with two brothers not pulling their weight. It's not fair and you have every right to moan, I doubt your brothers are coping with what you're going through?
We have similar, my sister who is 73 and has not been to visit my Mum in her nursing home since the beginning of lockdown, understandably, but she has taken over a few bits and pieces of shopping and seen Mum through the door. My brother does barely anything, he lives the closest to Mum but doesn't phone her or visit her. My sister and I phone Mum every day and discovered on Monday mum was extremely confused, her carers say she was packing a back to go home. Consequently it was discovered yesterday Mum has a urine infection!
Lily how did your first day at school, do you wear a mask or visor? Here the teachers have to wear a mask for the entire school day. YD who has applied to teach English locally says that some teachers don't want to wear masks so are going off sick. This should work out good for YD as it's a locum teacher post she is after. Try not to stress or worry, you know the precautions to take and I assume your students are spread out?
We had about 3 days of rain which was very much needed, and now it's back to sunny, even up to 24 degrees by the afternoon, which is a much nicer heat. It does get chilly though overnight so I have a quilt back on the bed.
Our choc lab is suffering from an allergy to harvest mites, constantly scratching and licking his feet. The blighters get in between the toes and all areas where there is a crease. He is on anti histamines although they don't seem to be doing much good.
I didn't mention before that for a week in August we let a room to air bnb. It involved a lot of bed changing, and cleaning but other than that we didn't see the guests after they arrived.
My physio has diagnosed dupuytrens disease in my hands. I'm seeing my GP tomorrow to see what she thinks, and like we do, after googling I've found that there is no cure but cortisone injections, or an operation to release the cords can help. Normally it makes the fingers bend into the palm, what I have is the opposite and can't bend the 3rd and 4th fingers into the palm. Trust me to be different.
Last night one of the cats was playing with something so I went to investigate. It was dead, about 12 inches long so I assumed it was a slow worm. However after posting pictures of it, it turns out to be a western whip snake (yuk) but a baby one. Does this mean I have a Mummy snake lurking about??? Really don't like snakes.
Well on that note, a quick hello to Lisa, hope you're ok, and I'm off to potter in the garden as the beans are growing like mad and need picking each day along with the cherry tomatoes. Take care and stay safe Love Carole xx
Hi everyone, and thank you for thinking of me and asking how I am (as ever) Lily.
The side effects have calmed down which is such a relief. I really did think that I’d found a drug that worked only to know that I couldn’t take it due to the horrendous side effects. Basically what one of the oncologists said would happen has, that my own immune system has reacted to the new drug (strongly) initially but launched its own defence when introduced to it. Once I went back onto the drug I was taking a lot of piriton and another type of anti histamine (which you shouldn’t really take together by the consultants both said I could). I was still feeling a prickling sensation nearly every 4 hours as the piriton dose wore off, the other antihistamine is a once a day one. However that gradually decreased over a few days so I was taking less piriton, which was good as it was making me drowsy! So now I just take a once a day antihistamine and that’s it, hooray. Am also not getting any of the other significant SEs that are listed so that is also a plus. And not quite so many hospital visits for appointments which I wouldn’t have minded ordinarily but they are still in Winchester which is quite a hike for me. Fingers crossed the main inhibitor drug is working, a scan due soon give me that answer. Other than that just dying to get back some form of normality, not just from my treatment point of view but also how we live with the new, post (or continuing) COVID world.
I hope that your anxieties about going back to work are unfounded and that the protection or systems that have been put in place work. It must be worrying when you are in your position Lily of helping with vulnerable family members outside of work and, not being alarmist, being in the age group itself that is more vulnerable. It’s all well and good for all the younger teachers as all cases below the age of 45 are very small in number but once we all get above 60 it’s quite a hike in the figures. Something my ‘healthy’ ie non-cancer friends seem to have totally disregarded when they have been going about their daily routines!
Anyway we are planning, or have planned a break in a few weeks near the coast but will wait and see what lockdown life brings with regards to new restrictions before we start thinking what we can do and looking forward to it. Who knows, we may not be able to go (it is still in the UK) as various areas have more measures introduced. But it’s not to visit my brother in the North West where they have had all those restrictions in place for weeks but are now being let out! He says it hasn’t affected them too much, as he works from home and his wife works for the NHS (it’s more aimed at the social gatherings that broke all the rules) but did mean he couldn’t visit and help out at my Mums who is still on to move house! I have unfortunately had to step in and do yet more sorting and clearing as neither brother has been able to, which does in fact annoy me. But I have told them I’m not getting involved too much, or committing to too much as I can’t. With any luck her actual move will be whilst we’re away and they can see just how busy and frantic it will be instead of me doing it all.
Moan over. How are you, Lisa andCarole? Let us know how life is where you are nd how you are coping with all the COVID stuff as well as all the other health and life issues you might have.
Hi, just wanted to check how you all are. So much rain recently and its starting to feel cool in the evening. I will be putting my heating on soon if it stays like this. Back to work tomorrow and feeling a but anxious about that. I have been really careful with social distancing but that is going out the window when I go back to work. I see so many people. Not terribly happy at all about going back tbh.
Nicky I was wondering what had been happening with your new treatment. I was worried you might have to stop it if the side effects became too difficult. I hope not as it had been so positive from the start. Fingers crossed it is still ok xx
Hello everyone, hope you are all ok. After the hottest weather in a long time and continuous, the rain got to us today. Instant floods on busy roads in to the city and then it just all disappeared. No problems here but i guess some people will have struggled. Quite bizarre weather with huge differences between us and the girls just a mile or two away. Then lots of thunder and lightning which we have enjoyed watching and now some cooler weather and more rain. Crazy weather this summer. Been a tough time with A level results and now hurtling towards the GCSE crisis. If they decide to tell every students what grade their teacher gave them, will there be repercussions? Will they challenge teachers in public or do worse if they know where they live? Just such a worry about students' mental health from not getting grades for uni/careers. I feel very disappointed for so many people. Our eldest is the year just moving into year 11 and I think they are in an even bigger fix, having missed 6 months of school and taking their first exams in 8 months time! I am the biggest nag in the world trying to get him started now, arranging revision guides, etc. I hope anyone you know who took exams has been able to carry on with their plans.
Carole the blood story was bloody awful. It sounds like a nightmare to me and I was praying the story would not end with them going for the groin 😞 Its their job to be able to get access and they need to practice on oranges until they have better control. I would have cried 😞 I don't know much about those types of drugs. I am assuming this would be very serious with covid19 around and you would need to virtually shield again? Such a difficult decision to make when a drug that helps you causes such damage and risk. Nicky the same for you of course. Any news, have they modified your dosage or given you meds to counteract the side effects better? Such a tough thing when the drugs have had such a great early effect. I hope they can help you with this.
Lisa did you send me your rain? It has been like a tap turned on and forgot to stop at times. As you said, the lawn will like it. I am protesting and keeping my shorts on, no matter what! Much love to all. Lily xx
Ouch, that sounds awful. From all the years I’ve had to have medical people stick needles in me to get blood out I know how horrible it is when they attempt it so many times. They almost forget that you are a human in their quest! And then to take 9 vials, I had that once at The Marsden (ahead of a potential trial) and that’s a lot of blood. You almost feel like you’ve been to a blood donor session when they’ve had that much so no wonder you felt upset and bruised. Hope that after all that they get some answers for you.
I must admit with the steroids, apart from their other side effects, I have been worried about the increased blood sugar. The new treatment I’m on also raises blood glucose levels so I’ve been given a monitor to check it in between the usual blood tests I have done. I was horribly high the other day and I was getting a bit worried but yesterday, after coming off the steroids it’s back into the low normal range. Phew.
Take care in that heat. I know when we were last in France for the wedding a few years ago it was unbelievably hot, high 30’s which didn’t drop at night much. We had stayed in more traditional places which of course had no air conditioning so a few uncomfortable nights and hot days. At least you can have a swim to cool off.
Morning ladies, it looks for you and for me the weekend will be sunny and warm. Our temperature is going to hit around 40 degrees. I don't like it that hot, 25 is about my ideal. I am a bit fed up of having a sweaty neck, back and hair is always dripping.
Nicky I am so sorry you are having such a tough time, I can only imagine how awful the itching was. It drives me nuts when I have an insect bite which is nothing compared to yours. It must be dreadful experiencing this side effects, especially when you know that the drug is helping. Yes, steroids also impact on the blood sugar, which is why I'm trying to avoid taking them as they always upset my levels. It's fantastic news that your D has a new job. Being a chef during these times means it is very difficult to social distance, as Mr P has found out. Yes, it is very anti social and almost always involves working weekends, and even on Christmas Day which I always found hard.
Lily, your 45 minute D experience sounds grim. I don't know how you managed to keep your mouth open for so long. Did you have little breaks from the treatment in order to open/close your mouth? Wow that was a big bill. As for the camper van, not really my type of holiday either. Caravanning is better because once parked up you still have a car to get around. At the moment things are so unsure because of restrictions, even over Europe. I see the UK is also going to see about quarantining again from France.
I had a rather horrible experience yesterday. I had an appointment with an auto immune doctor. He decided he wanted me to have a blood test so he can be sure what, if any treatment I might need. Obviously immuno suppressants are powerful drugs. So I had a nurse try to take blood, she tried 2 times to find a vein but couldn't. So then her colleague had a try, he managed to find a vein lower down my arm but couldn't only get enough blood out to fill 3 of the 10 vials. Then I was sent off to the laboratory so a more experienced phlebotomist could try. Well no such luck!! She tried 2 times in my arm, 1 time in my wrist, 1 time in my leg and then decided to go in the back of my hand. Experienced???? I think not. Eventually she managed to fill 9 and a half vials, leaving me sore, stressed and generally upset. Several bruises are appearing today.
So on that note I will say cheerio and enjoy the sun this weekend but stay safe buddies XXXX
I know how frustrating it is when you lose a long post. It takes a few days to decide if you have the energy to re-type all the very succinct points and information you put in the first one!! Have done it several times and will copy this one before posting as well.
So, thank you for all the info you sent. I feel I can now give an update.
It's been a real struggle over the past few weeks since eventually starting the inhibitor drug, yes it is Aselisib. Firstly it was going so well then a bad rash started which meant I had to stop that side of the treatment, and go onto high dose steroids to get it to calm down. It was classed as a grade 3 rash, grade 4 being even worse and meaning you have to stop the drug so you can imagine I didn't want to do that. So 2 weeks now of steroids, yuk, no sleep, but weaning myself off them so I should stop them today. Hopefully they have not been adding extra protection against a re-appearance of the rash and I won't need them, at least for now. So, Rash had gone, I saw my onc and re-started the tablets last Tuesday only to have a dreadful flare up and redness on my neck and part of my arms (but no rash) and then the worst itching possible - another sleepless night. Stopped the tablets again! That all went very quickly, surprisingly, so I re-started them again last Friday and have been stuffed to the gills with anti-histamines (mainly piriton) which is definitely helping but I do get the odd tingly feeling an hour or so after I've had the tablets so I'm very wary at the moment of what is to come, or will they help enough. All anxious times, as usual for me when starting a new treatment. And I do need this to work as it is a real life line (quite literally!). My tumour markers continue to drop in large chunks, although they had become ridiculously high whilst chemo hadn't worked, so I know it is the right drug, I just have to battle away at the side effects. Fingers crossed. However, as ever when I start on a new treatment there is so much adjusting to do and things to work out, plus the energy it saps from you, that it's easier just to say nothing to anyone until at least some of it starts to show some normality or consistency which is why I haven't been posting any updates. As to the mouth ulcers so far they haven't come back but then again they only appeared about 10 days into the course so I'm expecting them but do have a whole load of mouth washes and gels to put on them. Annoyingly I had one so far under my tongue at the back of my throat it took my a while to work out where it was and needed a cotton bud to reach it to treat it. That meant for a couple of days it just got worse which is when I felt so rotten with them. After I managed to get to it it did clear up relatively quickly. Also the ice lolly/cube trick doesn't work with daily tablets unfortunately. It's worked very well for me during IV chemo (it works like the cold cap and protects the inside of the mouth by freezing it as the chemo is administered), but I can't use it with these unfortunately.
The steroids are not dex they are specifically to treat the rash, but I did still get the slapped cheek look, as everyone does, on the first or second day of them. So they aren't causing the rash, its the allergic reaction to the inhibitor drug.
So, I will let you know how things go. At the moment not sign of needing imodium (but I was stocked up by the hospital pharmacy just in case) or diabetes which is the biggest side effect. I have a glucose monitor to use but I've learnt that steroids also push up the blood sugars so it's a bit high at present but had been normal so I hope it returns to normal when the steroids stop.
Onto you Lily. Sorry to hear your long visit to the unspeakable D place. It's bad enough for anyone let alone anyone hating the place. Well done you though and I hope the finishing appointment is not as long or worrying, hopefully that will be that, other than the huge bills to pay! A shame for everyone this year about holidays but, like you, I don't think we would risk it, certainly not flying anyway. If anything we might hop across the Channel to France later in the year for our anniversary but if not we will have to treat ourselves in the UK - as long as we're not lockdowned again.
Anyway some good news in all of this is that YD now has a new job. She had been concerned about going back to work and how it would all be once restaurants were able to open again. It's not just the customers that have to be socailly distanced, it's the chefs as well and thought there was no way it would be as it was. She loved where she worked and the people but extra distancing, shifts, smaller team would mean it wasn't the same. So on the day she was having a big waver she got a message out of the blue from her old boss. He said it was a long shot but he had just written a job spec for a new role where he's just joined and as he wrote it he thought she fitted the bill exactly. It's not as a chef but as new product development in a food producer which covers her love and knowledge of food plus uses all the skills she acquired when she used to work in the commercial world. So after many interview processes (far more than he lead her to understand!) she got the job. This is great news as it's double the pay she was on and about half the hours! Being a chef does not pay well and it's incredibly anti-social. There's travel included as well, when allowed, so it sounds perfect and right up her street. In fact she has since been speaking to another chef friend of hers who has said that he knows of quite a few who are leaving the industry at the moment. There’s so much uncertainty about whether places get shut down again so it’s not surprising and maybe some have taken the time whilst being furloughed to re assess what they want to do.
Anyway better sign off now, I’ve just had a major catastrophe with my pc and split tea all over it! Oops
Hello everyone, I am so sorry I have not replied but I wrote a really long post and was so frustrated when it deleted it. Its taken me this long to start writing again! I will see if I can retrace my thoughts from before.
First of all Nicky definitely offload anything you want on us. This is so bloody frustrating to have horrible side effects when the effect on the tumour markers has been so promising. On the other hand it is making such a difference hooray hooray. So I hope they will let you stay on this treatment and that no side effects pop up of the type that they refuse it. You will just have to moan your head off to us while it works its magic. I am secretly very very pleased to hear about the early results, even though I am trying really hard to be appalled at the side effects. So chuffed for you (except the bloody awful parts). So I am going to put my mind to try to think of things we used to do. We rarely had mouth ulcers but Joanne invented the eating lollies cure remember? That was to eat lollies during the treatment to freeze and thereby protect the tongue. We also used to drink like crazy to get the drugs out of the system and reduce the amount of damage time they had inside. I looked up mouth ulcers and there are some mouthwash style products too that might get to more awkward spots easier than cream. Crikey I had that horrible slug ointment I had to put on my tongue, horrible! Then there are some natural remedies that might be worth a shot. I found this for you.
3.Milk of magnesia...
I read that honey coats it to stop moisture getting out, that sounded the most pleasant on the list.
The longer journey too grrr. Can you get family to drive you sometimes so you can at least switch off from the traffic as well as having someone to chat to, always passes the time faster. If not you need to get some new cds for the car to singalong to. Hopefully by early September the holiday traffic will ease up. The other person I sort of know who is on targeted therapy is at Addenbrookes and has been completely taken off her treatment which was also very successful. She is not allowed to have it during covid time. That would be such a worrying thing to do to someone. Its so expensive there is no chance of her going privately. I would find that so hard to accept. Do you get side effects from the fulvestrant? So very frustrating to be taken off the tablets for the rash. Could you have piriton to counteract it? I had to have it iv after getting swimmers' nose on CMF as a precaution. It is used for rashes and hives so I would have thought it would be something you could at least try? Well when it comes to the steroid story I am in complete empathy with you as I have been suffering the same fate. Hands over ears Lisa its a D story. As I told you, one of my crowns completely snapped off at the start of the year and I had to have the root drilled out and wear a false tooth. I was just about to go for implant surgery when covid shut down all the dentists. Mine actually stayed open but only for emergencies so I have been enjoying many months of knowing I was completely safe from the dentist. Then came the fateful day when they rang to re-book. I haven't been able to think about anything else as the day got nearer for my 2 hour appointment. Anyway I went last week. I was not allowed to have a sedative due to cranky chemo veins and self-distancing. Nobody wanted to take the veins on, so had to be 100% awake 😞 .I would have been a lot less anxious if I had known that a lot of that time was actually them deep cleaning the surgery before and after for a surgical procedure. I was actually in the chair for about 45 minutes. I was wrapped in surgical sheeting, rather too much like a body bag for my liking! Then I had a lot of injections but only one made me really squeak. After that it was ok and I came out with stitches, dexamethasone, antibiotics and a pile of paracetamol. My first deposit payment was £1100 which is in addition to the bill to remove the tooth and make a denture to cover the gap. I asked the dentist which steroid it was as I had to take them before I left the surgery. He was explaining that they are the new covid treatment called dexamethasone and I was thinking oh no I wonder if they still make me crazy and hyperactive So Nicky I got the red sun tanned face again for a few days, I was boiling hot but no temperature and totally unable to sleep. I think I slept one hour the first night and a bit more the next night but got up at least 5 times to go to investigate things that suddenly popped up in my head. Victor said it was like sleeping with someone on lsd ha ha. I can remember going through the medical cabinet for the thermometer, checking all the windows, changing all the pillows, finding a fan and putting it on and off. It was a very busy night until I eventually crashed out. I went round Tescos in a complete blur and later wondered if I should have been driving. In fact it was all the effects that I thought came from the chemo drugs. Bizarre. So I have been having a good time on the little tablets with you. This Thursday I have to have the stitches out, yuk, another scary visit. Then in a couple of months I have scans and have the tooth fitted and pay a lot more money. Sorry that story went on a bit. So Nick I wonder if the steroids are part/all of the rash for you too? Might be worth mentioning and seeing if you could reduce the number of tablets and/or number of days you take them. Really glad to hear you got away for a few days. I love the Hastings area and we really like the town of Battle as well. So much history around there and the sea air always makes you feel better. You need to just do everything nice you can to put up with the bad days. Are you keeping a diary so you know when to expect the side effects and plan quieter days? I hope you can tolerate the treatment and do bear in mind my rash from just the first day of dexa. Maybe because we have had so many in the past? Most of all I am so pleased it is working so well and hope that they can modify the levels to allow you to stay on it but with a bit less discomfort. xx
Lisa sorry about the horrendous story at the you know. I was petrified. Now all the shielded people are out more perhaps you could take mum and dad out to somewhere like garden centres where you are not in crowds and outside. That might be better than the big tourist spots around you. Hopefully they will all go home as schools start back. Dad will need some new hobbies and things to distract him without work. What kind of things does he like to do? Its a shame to leave friends there but he is at an age where he should be able to do what he wants rather than go to work every morning. I know he probably really enjoyed it but they say people live longer if they get rid of the pressure of work. Also the risk of catching covid. You mentioned Tenerife being a less risky place but I just don't think I feel confident being on a plane full of people and hoping they don't sneak their masks off or using the toilet after people. So its a not to abroad for me for a while. They say Greece is pretty low risk but I am not going. The weather is so different from north to south at times. I am constantly watering my lawn but I have such a good tan this summer. Which would you prefer? I did have a lovely day out on the coast with some of the family who hired a beach hut. It was perfect and we had a lovely long day on the coast with cream teas and just lounged around. Perfect. Carole you mentioned holidays too. I think if I lived on mainland Europe I would be happy to hop over a border. Victor is tall and he cannot fit into a caravan bed without taking the whole space up so I am not sure I would get him in a camper van haha. He would be hitting his head every 5 minutes. I am not at all keen on camping either and insects really spook me. So i think its going to have to be stay home or go to a hotel this year. I am wondering about later this year but would you book? I think we might just see how it is and take a last minute break if we go at all. All our anniversary celebrations had to be cancelled and my birthday ones. Not the best year to celebrate. Can you believe our very youngest had his first birthday this week :). We missed so much of his early months. I hope that your physio may start to become more effective over time. They always told me it would hurt more before it got better, which is hard to put up with. I hope you get on better soon.
Well better see if I lose this one too. Might copy it just in case. Take care. Nicky stick with it and just keep typing posts to let off steam. Hugs Lily xxx
Sorry everyone I wrote a really long post and then it just said authentication failed and deleted it. I will retype again another day.
Hi all, quick pop in from me, Nicky the bloody bloody side effects sound horrendous and that ulcer had me crossing my legs in pain for you, imagine not being able to eat, I've shoved everything possible in my gob (Cumbria lingo). It was great to hear that they are working though and you've had a few days away.
Carol your fingers still sound so painful, but your weather and garden sound lovely x
Lily, bet you're glad of a nice long break. I agree re holidays tenerife seem to be handling it great but it's the journey and I struggle with masks. Weather lousy but it's helping my turf.
Not much to report here, hoping for some nicer weather this week and I've taken a week off, works been so crazy and I've been getting grumpy but it's not great when you can't do much. I've only been parents and supermarket so struggled with same 4 walls. Brother had camping weekend about 40mins away so we pooped along for day with folks and was lovely to get out. I've not done much cos of parents, dad's left work on Friday as was porter at hospital and being 71 with underlying conditions not safe, he's gutted and they are fed up, was hoping for wee caravan break locally but not sure as they are wary and it's packed with everyone flocking to the lakes. Anyhow planned two meals out with friends at weekend but nervous and wondering about avoiding parents after I've done it as paranoid about germs, it's hard trying to balance a little bit of normality with safety.
Better log off, love to all and stay safe x
Lily you must be relieved that summer holidays are here, but, what a different summer this year will be. I'm with you on not wanting to fly so have you decided where your staycation will be? I've visited Somerset and Devon quite a bit in my younger years, or have you thought about hiring a camper van so you can have your own accommodation and even cater for yourselves if you want. Probably not your idea of a holiday as you are used to flying and staying in a hotel. Mr P has quite strict controls on his ferry and usually changes into something sloppy (eg house clothes) as soon as he gets in.
Nicky your side effects sound horrid, what will they do to help alleviate them? Maybe a lower dose of the treatment and build up slowly? I don't know if this is possible but if it worked in just 2 weeks it must be pretty powerful stuff. Your days away sounds nice, I'm jealous of you having fish and chips😁.
Hope you're ok Lisa?
Our weather has been mostly hot, too hot to be outside sometimes and some evenings and during the nights it has been difficult to sleep. Today is a welcome relief as it is cloudy and much cooler.
I started seeing a different physio for my hands, fingers which still won't bend without pain he is manipulating and using the ultrasonic machine. Not much improvement after 5 sessions so far. The auto immune bit of my blood test still shows positive, so for this I am seeing a specialist and hope to get some answers. The problem with my hands has been nearly 2 years now. Peeling potatoes, a simple every day task is very hard
Most of our green veg has been massacred by the white cabbage butterfly and caterpillars, although our cabbages seem to have survived this attack and are very nice, our tomatoes are just about turning a bit red and our green beans are growing well but not producing beans yet.
Better get on, i've got watering to do. Love Carole xxx
Yes it’s been a while since I posted but I’ve had a few ups and downs with the new treatment, as always happens when you change and that has been taking up my attention trying to get it sorted.
So I’ll off load all the cr@p I’ve been dealing with, then do a general update.
I now have to travel to Winchester for my appointments, either hospital or face to face oncology, which, although is a safe environment, is not the same as I have been doing for the past 17 years with BC which has been locally about 10 mins down the road. Normally no problem to get there, Winchester, by now there’s more traffic on the roads I have to allow extra time, especially as it’s a popular holiday route to the South West so the motorway is often jammed. That’s just one of my hassles at the moment when I’m having to go more often.
I started the Fulvestrant element of the treatment about 4 weeks ago and then, once funding had been approved I started the expensive element! This is just a case of picking up the tablets, plus a carrier bag full of meds for the side effects (that should have warned me!) and taking them at home. First couple of weeks were OK, minor SEs mainly a bit of nausea when taking the tablets. Then the real SEs kicked in, obviously as there’s more of the drug in my body. So a slight rash to begin with, nothing too much and did fade a bit. Then last week the real rash started! Horrible looking and itchy as anything. Plus an awful ulcer on my tongue which rubbed when eating, talking or anything. So another ‘quick’ trip to the hospital thisMonday having already been there on Friday for my injections, to be assessed. Outcome was to stop the tablets to allow things to settle down plus take a bunch of steroids (my favourite insomnia cause), creams, antihistamines and goodness knows what else. This is expected when SEs get so bad but annoying knowing that the drug is working as shown by my tumour markers dropping substantially even in the first 2 weeks. So my skin is less crocodile looking (lovely), still itchy and the mouth ulcer/s which are in an awkward place under the back of one side of my tongue (therefore making it almost impossible to get any gel on them) continue to cause me pain. Not so much as a few days ago when I could hardly swallow or speak. So not a happy bunny and as you can see what with trips up and down the motorway, phone calls, blood tests, face to face and phone appointments I’ve been busy!
Onto the better part of my week though. OH and I had said we would go away for a couple of days this week, as much for him as for me (this was before all the SEs kicked in). We decided to go ahead anyway, with me packing my whole pharmacy up to take with me ha ha. So we have had a couple of nights in Kent to do a bit of R and R, go to the sea, have fish and chips etc. Weather has been great, just right amount of sun - with me covered up to stop it burning any delicate skin that’s already full of rash. We had hoped to visit some of the castles and gardens in the area but one thing COVID has done is stop you going anywhere like that on the spur of the moment - you need to book tickets by 3 pm latest on the day before you want to go! Understandable, although not sure why 3pm when they already know their maximum allowed numbers at any time slot, but it’s meant we haven’t been able to as the popular slots are already booked! Never mind, we’ve enjoyed our exploring in the old towns of Hastings and Rye and just sitting on the pebbly beach with a lovely view.
So, a long (overdue) update and will add another when I get through this phase and back to a more normal, or should I say predictable, phase.
Take care all, sorry I’ve not commented on any of your news but I needed to offload, but I have read all the posts. Take care and keep safe.
Hello buddies, how are you all? The weather here is so changeable, with baking hot days where you just want to be in the shade and then the usual grey cloudy days. Such a mix but still short weather 🙂 I have finished work now and it is nice to not have to do all the work online but its not like the usual holiday. I don't feel confident to travel abroad, mainly because of being on the flight and relying on others to follow the rules/ That might not be fair but I also think if I got there and found myself ill from the flight, I would be in a terrible panic in case stuck there and one of us on a ventilator, if really unlucky. So its the UK for us but I can't find any holidays so its home!! Have any of you booked anything? Carole you could travel without going on a plane but is your diabetes making you more cautious? I bet you have Mr P straight in the shower and all clothes changed when he gets home from the ferry trips. My daughter makes her husband who is a posty strip in the porch and shower before he sees the baby. Have a you got a very hot spell in France or the same as us, different every day?
Nicky how are you getting on with the side effects of the drugs and the hormones. Been a little bit quiet so I hope all is well with the family and you. Also that you can tolerate the drugs. Some you get used to I think and others build in toxicity to get a bit worse each time. Hoping you are doing well on this. How many days do you get when you need to take it easy? Keep me posted how you are xx
Lisa is the sun getting up north to you? I look at the temperature on the weather and you are often a lot lower than us. Can't we tempt you to come south? 🙂 Hope mum and dad are keeping well too. Are you back at work now? Better buzz off . Hope all is well love Lily xx
Hello everyone, how are you all? I am whizzing towards the end of term but its usually an exciting time. Not this year but at least my days will be my own as so busy working from home and every week someone decides to give us another big job to do. Online lessons are draining and you just don't know if they are any use as so little response. We re just starting to hear what September will look like and I wish I was retired to be honest. I'm a bit stressed about how much running around I am now going to have to do at a time when I can't carry heavy things and dash everywhere. Looking forward to seeing the kids though.
Nicky I did look some things up as I like to be able to discuss things with you and support you. Are you having Alpelisib (Piqray) and fulvestrant? There are so many new things around, its excellent that so many new treatment types have opened up. I did read that this one has a lot of reactions with other drugs but on the ordinary types it mentioned not buying anything across the counter or taking vitamin supplements or anything herbal. It had reactions with a lot of drugs that you will probably never need but it does include diclofenac (volterol, etc) and ibuprofen. So be on your guard and check if you get anything at all. I am sure you are already on the case with that. It sounds a wonderful drug and I am always astounded how researchers work these things out, so clever but as you say there are a lot of things to look out for. Hopefully you will be able to tolerate it nicely but did you report the rash? I can see its a common side effect but like all rashes it needs monitoring. I also read you have to watch out for the runs and need to take Imodium quickly if it starts, so just checking it is in your cupboard already?? Brilliant to have tablets rather than needles as I think you are good at taking them, unlike me. Hopeless! I am keeping my fingers crossed as always and so good you feel an improvement already:). Keep your food content high to help counteract the drugs and drink lots please. Ok I will stop now 🙂
We had a lovely anniversary, not quite the big occasion we had thought we might have. We planned to hire a big narrow boat for a sail through all the locks with food and drink on board. However a sneaky party in the garden, albeit separated/self distancing with my nearest and dearest was perfect and more than I expected. Our problem is the number in our family to be all together. Anyway we had a really nice time and the girls had contacted so many people and they had sent in messages for us, which are all on a lovely cd to keep. The littles made me very emotional, so sweet and lots of messages from people overseas, just about every relative we have and some we are unlikely to get to see now. It was perfect. I am waiting to choose my ruby gift when I can shop more comfortably. Not a major red fan so thinking about what I would like. Still not really going to many places, just food shops. I think I need to get braver but I have to go in to both my oldies so should I? Its a dilemma. Lisa how are you getting on now? Can you see your parents? Are you going out to places yet? Carole thinking of you too and hope you have some company from the family before too long. Love Lily xx
To all your questions I think the mutation is only BC related, nothing I had prior to BC. In fact the mutation that is being targeted with the new drug I'm on is one that 40% of BC people have! Worrying but until drugs become cheaper and more accessible there's no routine screening. This was brought up at a recent oncology conference (virtual of course) that my own oncologist told me about.
A long list of SEs which I'm keeping an eye on with monitoring (blood sugars, blood pressure, blood tests etc) but one of them, a rash, has just started so will have to see if anti histamines will help. Certainly at the moment I feel it is working, the first time I've actually felt something get better, just shows how uncomfortable it had all become. You are right about winning the lottery Lily. I would have needed to to pay for this drug! The CDK inhibitors are just about 'affordable' if you self funded but this one, no way!
So other than getting used to this treatment (which is daily tablets plus a 4 weekly hormone injection, so not too many visits to hospital) we are also adjusting to less lockdown.
Have had an inside visit to my Mum's, but kept mainly apart, plus have had daughter and family here at ours, for a cuppa. YD has gone back to London now and keeping fingers crossed that she gets a job that she was contacted about by a previous boss. Not at a professional chef but in a commercial role in the food industry (using her previous experience and training before she trained to be a chef). Very boring for her at present though with nothing to do until she hears about it, interviews are still ongoing so there's a bit of a wait.
Weather is very unpredictable here in the South, wet today but should be drier and sunnier later in the week, nothing as hot as we had a few weeks ago, and almost all of May which was lovely. June was very up and down. Carole, if you're enjoying your kale try it roasted in the oven, it's delicious and the only way I like it! Just look for a recipe online, very easy and quick, nice for a snack of kale crisps as well!
Lily, I hope your ruby anniversary gathering went well and you enjoyed yourselves. A different celebration I'm sure to the one you had planned but nice either way. We were celebrating my brothers 60th birthday yesterday - on a zoom call with the big party that was planned for this coming Saturday now on hold. He had a good day though with family and it's difficult for us all to get together as we are so far flung anyway. The zoom calls have become a regular weekly event for us all so we're probably more in touch than before COVID!
Lisa, enjoy your gardening and hope the weather has improved where you are.
Hope all of you and yours are all keeping well.
Hello all, nice to see posts from everyone.
Nicky, I looked up the 2 gene mutations, gosh it's scary isn't it how our bodies can produce these defects. Did I understand correctly that the mutations were something you were born with? Or, is it something that derives from the cancer mutations. Sorry if my questions sound a bit daft, I also looked up the side effects and can sincerely say that I hope you find this inhibitor easier than chemo. In any case we all hope that this new treatment will kick the buggers away.
Lily, very sorry for the confusion. How is your garden renovating going? How is the new puppy getting on, is she easy to housetrain? Hope all your elderly's are keeping safe.
Lisa, do you enjoy gardening? Has your weather improved? Hope you and your family are staying safe.
Our raised beds are producing well, except for one type of lettuce. We have already had the broccoli and some kale which was delicious. The good thing about this plant is the more you pick the more it grows. We've had to keep out the white cabbage butterfly, who's offspring completely destroy green veg. We have tomatoes and cucumbers too.
YD's divorce interpretation went ok, she was pleased with how it went. Hopefully there will be lots more in the future and hopefully too she will become an authenticated translator as there will be lots of documents needing translating owing to Brexit.
My constant cough got the better of me as it was keeping me awake for a few hours at night. So my dr gave me a ventolin inhaler which has really helped. Not much can be done about radiotherapy damage.
Off to enjoy the sun and walk the dogs now, although I'd rather be having a dip in our pool but I can do that when I get back. For now, stay safe everyone and take care Love Carole xx
Hello everyone, how are you? Nicky I am so pleased for you and it sounds like you won the lottery being allowed to have that treatment. And of course you deserve it. Someone at works wife is on a targeted therapy and having excellent results on it, fingers crossed this is the one we have been waiting for. All the different mutations, it just shows you they find out more every day. It must have been such an anxious time waiting to hear. I think there are a few drugs so I am not sure which you are on now but very pleased you are. what sort of side effects do these have, are they bad on the tummy? You know we are all so pleased for you. How long are you in hospital each time and what sort of gap between doses? Such good news 🙂
Carole I was wondering how your daughter's translation divorce case went? I am sure she will get more confident as each one finishes. As usual I am jealous of your pool as our stream just isn't the same! Is the hot weather better for your joints? What is next with your treatments. I must have confused you as I am not able to have the little ones here to look after yet.
Lisa good to hear from you. Snap, we are doing things in the garden. That's a lie I have ideas and Victor does the hard work. Not my idea, but our son wants to do weight lifting at home so they have ordered a big shed and seem to be sorting all the other sheds out to clear rubbish. I hate sheds and he has bought 2 more 😞 I am just too busy with the oldies and work that days just blur into each other. I have to do a lot of live lessons and meetings and some are fine but some are really stressful. I always stick a post it over my camera and says its gone wrong ha ha. I hate the way the screen sometimes freezes and you stare at this awful picture of someone's mouth wide open and all their teeth. Yuk. Not for me. People just keep thinking of more and more things we can do and I am just going to explode trying to get it all done. I think I am going to find it really hard to go back to work as there are so many rules and I am still worried I am going to take the virus in to the olds and kill them all. We have a nice weekend as it is our ruby wedding anniversary. We can't do the things we had planned and to have a party but we are having an outdoor distanced gathering and that's good enough for me this year. Like you I am very worried about pubs and clubs especially as son has been helping someone set theirs up so will be in the thick of it. I am much too scared to book a holiday abroad. The bit that is worrying me is the airport queues but especially the flight and then transfers where I am fairly certain we would all be squashed in as usual. Then if one of us got ill out there!!! No just not ready for it. Are any of you feeling a bit braver and planning a trip?
Well this was a really lovely time to look at the posts. Really lovely news. Hugs all round Lily xxxx
Hi all, nicky so happy to hear from you and hopefully this treatment works, wow so so pleased your oncologist has pushed for this new treatment and you got the trial drug it sounds like they are doing everything they can for you and I'm sure it's going to be a wierd few weeks waiting to see the impact of the treatment and side effects. I csnt even begin to imagine the anxiety.... Fingers and everything crossed it goes well and keep us updated. Looking forward to Doctor Lily's update on the drugs too 😊😉.
Stay safe everyone, I'm still busy with garden renovations if the rain ever stops. I'll be staying indoors out of the way this weekend as I've a feeling there could be trouble locally with young ones pubbing it.... Xx
After several weeks of stress trying to establish a new treatment and get it in place I have eventually started! So, a bit of background, I have had my blood checked on 2 occasions for a ‘liquid biopsy’ which shows any DNA floating around plus many other things. The test usually costs quite a lot to have done as it’s only available by private laboratories but for some reason my Trust has allowed them at the moment, the other one was done a few years back at The Marsden as preparation for a trial. Anyway both of them showed up a couple of mutations I have, one for CDK and one for PI3K. Currently CDK inhibitors such as ribociclib, palbociclib etc are only allowed as 1st line SBC treatments and PI3K inhibitors are only available on trials. My oncologist had asks all the pharma companies to allow me to have their product (whichever one they manufacture) and although he didn’t expect a positive response he did get one. So I have started on the PI3K inhibitor, alongside a hormone treatment. This took a few weeks to get the paperwork sorted during which time I was getting more anxious as I knew the current treatment wasn’t effective (another bit of information from the liquid biopsy) and I was getting more uncomfortable as my liver was suffering from lack of treatment. Anyway I started last week and we have to keep fingers crossed that the treatment is effective.
So this is the reason for not updating as I didn’t know if I’d get the treatment for definite until I literally got hold of the tablets and felt pretty rotten in the meantime, even if just the stress aspect. My oncologist has been really good getting this new drug and also being in contact with the Dr I’ve seen previously at The Marsden and running all decisions past him at the same time and engaging with my cardio-oncologist to check all the heart related issues. There are obviously SEs with this new drug, as with all, so I have to check all sorts of things and have a whole back of medications to help with them but we will see how we go.
Hope that gives you enough info, and some things to look up Lily 😉.
Hope you are all OK and doing OK in the current circumstances. Gradually easing of our lockdown but no real plans for this weekend for us, just taking it easy and avoiding all the newly opened places!
Lily it must be an enormous change for you to work from home and it sounds an enormous challenge to look after a little one whilst you carry out your tasks. Do you set him puzzles, playdoh, Lego etc whilst you are busy.
I understand what you mean about online planning and tuition, YD has been doing the same since start of lockdown. She is just beginning to start one to one lessons face to face. Anyway, thankfully she has still been working as not entitled to any gov help.
We've had a very hot week here, so thank goodness we are lucky to have a pool. With the very hot weather we get incredible storms too.
This evening we ate our first homegrown produce, new potatoes and early broccoli stems. We're battling to keep the green veg from being eaten by caterpillars laid by the white cabbage butterfly.
Next week YD is doing her first interpretation case in court for a messy divorce so we wish her well as she will be nervous. This week she found out her business account had been hacked, thankfully today she got all her money back.
So tomorrow we're making proper net cages for our green veg to keep those damn butterflies out.
As I'm off to sleep another storm is starting so wish me luck for sleep and I wish you goodnight, and have a good weekend love Carole xx
Nothing to report at the moment but will do when I know, we are looking at targeted treatment in answer to your questions Lily.