Breast Cancer Now Forum

Would we ever be too busy for you???  AAh good to hear from you. What's going on at work then? Lily xx ... View more

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 ... View more

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 ... View more

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 Lily x ... View more

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 ... View more

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. Home remedies for ulcers on tongue 1.Aloe vera... 2.Baking soda... 3.Milk of magnesia... 4.Hydrogen peroxide... 5.Salt water... 6.Honey... 7.Coconut oil... 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 ... View more

Sorry everyone I wrote a really long post and then it just said authentication failed and deleted it. I will retype again another day. ... View more

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 ... View more

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 ... View more

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 ... View more

Hi everyone, I have been looking in to see if any news and then forgot to answer so sorry Carole.  No I haven't gone back to work as I put the others at such a high risk I  am allowed to be off. Feel bad not go but would feel worse if I brought the virus back to people. I am really busy doing everything from here so I can safely safe I am working 5 solid days and often evenings. I have to do online lessons too so they take a lot of planning. Not very keen at all as you never know who is watching you 😞   So many things you can get in trouble for if anyone does anything inappropriate. Nerve wracking. Only the 2 years who will take exams next June are in and they are in tiny classes or bubbles and can't talk to anyone else so not exactly normal. I hope they get something out of it. A lot of mental illness in secondary schools from being home and isolated. Some have done nothing at all and nobody at home has made them so going to be tough getting back into a routine. One of my littles is back but was only offered 2 days each week. His brother can't go at all. One daughter has to go back to work and 2 of hers allowed in school part time but one not at all. So difficult to do everything. They have been in my garden which was lovely so we see them individually more now. Getting ready for the next easing 🙂   How are things in France now? I feel like we got your warm weather as absolutely baking here so I am still catching a tan.  Lisa are you able to walk out and about with your parents now ? I hope you are able to see more of them. Are you hoping to go away this year. I don't feel I can dare go abroad but hoping to visit some nice UK places. How about you NIcky? Are you able to fit a little trip in at all, somewhere in the UK? Any news yet about the next plan of action for you? Hoping to hear that they have a good idea of what they are going to try next and most of all that you agree with their plan. I am sure you will have been doing some research. What are  your thoughts? I wondered about a targeted therapy or immunotherapy. Are either an option for your dx? I have been thinking of you and hope you have been able to take this next blow as well as in the past and are ready to go forward. It must be tough but I know you are tougher buddy. Hugs Lily xxx ... View more

Hi ladies,  Nicky always glad to hear you back out there, gloves on ready to fight, using your immense knowledge to work the science. I really think they give more respect to people who ask questions and come up with ideas. It makes them make of an emotional investment in your treatment I think. I am sorry that I have totally lost track of which type of regimes and treatments you have had. I have always wondered if you had more than one type going on as they mutate, what do they say you are now? You had Herceptin, can you repeat it? I hear a lot about targeted therapy and immunotherapy and wondered whether they had explored these options fully. Someone I know through someone else has been in Addenbrooks having one and she has a really tricky dx but has been responding well. Which hormone are you on for now? There is always the option of getting on a trial to access the newest drugs in, if there is one suitable. You can often pick up a lot of information from the trials to see the way docs are thinking treatment should go next. Anyway you get your head in the internet and get reading to plan the next moves.  Always here to talk if I can help. Never on your own in this buddy. Hugs Lily xx Lisa two posts so soon 🙂   I have a house full of paper and work too. never seem to quite get round to sorting it all out between sorting the oldies, Teams meetings and setting work. The new pup is so gorgeous, likes to wrap herself round my next like a little scarf in the afternoons to snooze. Got piranha teeth though so only when she is being cuddly. Has anyone thought about doing anything in the house during lockdown? Carole? I really want to decorate but too tricky with the fur ball trying to escape! Must go now as a birthday weekend. They aren't quite as much fun but we will try hard. Love to all Lily xxx ... View more

Lisa it is really nice to hear you are ok. I do worry about all of you if it is quiet. We lost a relative so its been tricky with mum, it was her sister. We watched the service together which was surprisingly lovely. We all worry about everyone don't we? I want you to get another dog please. I think you would love the company and there are so many dog care firms now when you are at work. Keep in touch. Carole hope you are ok. Do you watch the British news to see what the latest is here? We are glued to the bulletins in case with miss hand out another thing you can do time. Almost every day. Take  care xx ... View more

Hi Nicky, This warrants a bloody post! I am really bloody sorry the bloody chemo didn't do what it was bloody paid to do when you put up with all the bloody blood tests and bloody side bloody effects. Just not bloody fair you deserved so much bloody more.  I always hate it when you go quiet because it takes a bit of time to get over the disappointment, scare factor and trying to act ok for all the family, well for the girls I am sure. What do the latest scans look like? Is it progression or just not shrunk them? We always invest so much emotion in these treatments and it takes a little time for it to settle and to get used to the latest bloody news. How are you managing? Must be so much harder during lockdown too. I hope being on hormones means that you will quickly become less vulnerable to infection so you can do a bit more. It sounds like you are seeing mum and the family which is lovely and I hope that helps distract your mind for a while. I feel like I am picking up vibes from you while I am writing and I feel like this was a particularly tough one to hear buddy. Big hugs. If you want to see me I will come and shout through your window to you , always here for you. So the hormone tablets actually did ok before from memory and not being on chemo is nice too and have a break. What regime are they thinking of using next. I hope they have a good plan coming together and after a bit of a break from hospital they will have a plan that will help lift your spirits and help to move forward. Have you looked at what you think might be a good next drug yet? Sometimes you have gone up to London too but I feel that would be quite complicated so maybe they will correspond with each other instead. Sorry I didn't get back on here sooner to talk to you. Air hugs and always here to talk. What are we doing next??? Love Lily xx ... View more

Hello everyone, especially sorry Carole you must have wondered where I disappeared to! I think I am a bit more pouches of food and dry biscuit for dogs as I could not face your feeding regime. I think you must be right on the end of adventurous! I can't even think about ordering things like that especially to make the chicks be killed 😞   Ha ha my poor dogs would be on cheese sandwiches before I could even have that in the house. I do understand the health reasons and just not for me, especially in my kitchen equipment lol.  She does have pouches with vegetables in though and she is teething on cold carrots from the fridge. Her little face was an absolute picture the first time she saw one. She is doing very well on the pouches. It was just too worrying with her struggling to swallow the stuff and then completely black poos which means bleeding in a person.  Nicky any news yet from your latest results? I remember you were going to a different hospital and hope that it feels safer to be away from the main hospital and associated dangers. I hope the chemo has done its job and that the ct results were encouraging. Its been a bit quiet which always worries me. Quiet from Lia too./ I hope you are ok and the family too. Nick have you manged to see your mum yet? I know you were wondering quite what to do. Well after their sister died mum has got very anxious to see her brother who is shielded. Anyway last week when he was allow to go out at last I managed to get the 2 to see each other for half an hour and mum is so pleased it was worth the effort and me opening every door between his and her home, etc.  I am very much enjoying the family and gc being allowed to visit the garden but very annoying when it rains! They are very keen to see the puppy of course but ours is like their second home and they have missed the contact and running up and down our long garden, wrecking my plants ha ha. Well ttfn or I will never get round to posting Hope all is well. Love Lily xxx ... View more

Hello buddies, how are you getting on? I can't decide if I am getting used to this or if its getting worse. I think being really busy probably help a lot. Son is back at work so I can attempt to eat less times a day now. Did I tell you we have new puppy? She has been here a week now and is just such a sweet little pup. She is a poodle and we got her at 8 weeks old. She has not had any accidents in the house, which I am amazed at. Our oldy is vaguely interested but mostly sits on anything that's too high for the pup to reach her. She tends to pretend pup doesn't exist and then when she decides she wants to play, she gives such a loud woof and leap that the pup is petrified and runs for the nearest cover. The puppy is really small and we have gaps at the ide of just about every piece of furniture in the house, that we hadn't actually noticed until she tried to explore. She had been brought up on raw food. Carole what do your dogs eat? Raw food is very in over here for dogs and fans of it think nothing else will do. They even eat bone in it. We brought home 2 weeks of food from the breeder and they said she did not eat very much so we have been worried in case she went down hill. The raw food was just huge lumps and the pup only has those sharp piranha teeth with no chewing ones yet. So she was spending ages trying to just get through it and then giving up or just playing. So we have moved her to pouches of food which are part raw I think and have veg in too but most of all it is softer and not huge lumps of gristly bits. So she loves this and is eating a lot more now :). She is officially our son's dog so he is getting the early morning rushes to go in the garden. Perfect, enjoy  puppy but have no night disturbances. Nicky I know what you mean about the virus. I have one oldie who is shielded and they told me he is right at the top of that group. I have a special code for him and have to give online updates on his health to the NHS. They wanted it every day which I was not going to do, as I don't even see him every day. He misses going out as he has no idea what the virus is and can't remember anything so blissfully happy at least with no worries. Mum is in the old group being 90 next year but is not shielded. She can't get out anyway so might as well be in that group. She understands it all so its playing on her mind and making her depressed and often very moody. Usually comes my way. Then my bil had an accident and can't use his right hand. I had to leave him at a and e as nobody can go in with you, except if children then one goes in. We have taken him 3 times and go again later this week. So all our distancing slipped with him as I found I couldn't drive with a mask on, thought I was going to pass out. He lives alone and has not been anywhere at all, so he is like a shielded person but need not be either. It gets so complicated but he can't drive with one hand and you can't go in a taxi or on the bus. So I am shopping for 4 households again, takes me hours to sort them all out and deliver it all. I don't mind but I must go out more than anyone I know as I try to avoid going straight from one to the other to reduce risk. How are your hands from all the washing? I have been using a thick hand cream day and night and so far they are ok. I have been asked if I will go back to school to teach. What a dilemma. I feel if doctors and nurses go then why not me, except we will have no ppe at all in school. I get paid so I should work like everyone else has to. I want to help the kids taking exams next summer. However I will get a lot of contacts. My oldies won't survive if I take it to them. Victor is worried he will not do well due to being  oldish and male plus he has asthma. So I don't know what to do at the moment but I have a little longer to decide. Any advice? None of my girls are sending their youngest in as they each have one of the first called to go back. The youngest who would have sent one of hers has only been offered a single day each week and its not really worth the risk as  his brother isn't allowed to go. The other 2 would have maybe gone in have been told its 4 full days and you have to go to every one and that has spooked them. So nobody here is feeling confident to send them and they can only play with children they are told so they don't think they will be happy.  Carole how do things look over there? I wondered what types of businesses and shops are open now? Are you finding it ok to get everything you need? I can't remember when I last bought diesel as I drive so much less these days! How are the veg coming on? Everyone here has gone baking and gardening crazy it seems. For week it has been difficult to even buy flour, such is the demand. Nicky I do feel for you as good days are so important when chemo cuts into your weeks. Glad to hear you are finding some isolated walks but I expect that is getting harder as people can go out for longer. We know someone who is 83 and has lung cancer and caught cv19 and pulled through and came out of hospital. Amazing and I don't know why we can't hear more stories like that to give people more hope. What did you decide to do about visiting your mum or not? Mine would have just wilted and died if we had not seen her so it was an easier choice. She refuses to eat if unhappy. A much easier decision with someone who is already at the end of their life but for you, its risking so much more. I do feel for you. Have you had the CT scan now? Keep me posted what the latest results are when you get them. Fingers crossed this chemo has been doing its thing and making a difference. Sorry to hear it gives you tummy trouble, do you have any medication to help it? I once had those terrible tummy cramps and was given buscopan which also had something to stop cramps and it was really very good at taking the cramps away completely. It reminds me a bit of when I was on the cmf part of my treatment and I could not eat any fruit or veg at all, not even a single cherry tomato. Have you tried just taking all fibre out your diet and having a carbs and protein few says around the treatment? I found eggs were really helpful too. Couldn't eat even a slice of apple until I came off it.  Might be worth trying. I hope it is going well because you would put up with anything for a good result, I know. Lisa just wondering how you are if you get a second to reply. I have been thinking about you as there were a lot of cases in the north, hope all is well. Love to all Lily xxx ... View more

Hello everyone, how are you getting on? I know a lot of people find the mental aspect of the isolation from family and friends most difficult. We can go out for longer but now I have so much work I don't have so much time. Typical! My son would have loved to go fishing on his own and of he couldn't but now he could and he is back at work. He was not very impressed to be sent to right down to the south coast in a town location in case he got a lot of people coming to see what he was doing. As it happens they didn't but it was a long journey each day and back as you can't stay there. Quite a good journey time though. Victor is working at home as usual, nothing different there, still starting work at 5am!! He just uses zoom instead of the once a week trip into London and stays home all week. I am really busy as people think of more and more and more things they could get a teacher to do. I am already trying really hard to say extra chatty things on all the work, send feedback to every student for every piece of work  and email my tutor group every day and reply to every single person who emails me. So when we all get extra things to do it gets a bit of a heavy load and I find myself working parts of Saturday and Sunday. I like doing it as I know how tough it is for some of the families trying to teach and do a job or for those whose pay or business just got trashed and I try to make what I send easy to understand and encourage them. Its a tough time for everyone that is for sure. Now we have a return to school on the horizon and that is really tricky because it increases my contacts hugely and then I could take cv home and also to mum 😞   . Waiting to see what I get asked/ordered to do - I don't know which it will be. On a brighter note the weather has got a little warmer again although it seems I see the sun, decide to wear shorts and then it clouds over. I am soon coming up to missing my 2nd holiday 😞   . Have any of you booked anything? I don't see the point at the moment having had 2 holidays cancelled and only one is refunding our money. The other we have to go at a later date or lose our money, so we popped it over to next year. It seemed safer. I hope you managed to get your treatment Nicky and that the jabs are working well to help your counts go up. We have a funeral next week, surprisingly quick really but I think I told you we cannot go. Mum is upset that they won't let her send flowers. I don't understand why they won't let her, but immediate family say she only wanted one and it will be theirs naturally.  Sometimes you wonder why things have to be difficult. Anyway Carole it was lovely to hear from you. I have no idea how to get photos on here and won't try so thank you for being good on the tech side. I feel great empathy with you on the mums. They are so feisty but I think that is why they got through all the hurdles in life along with some good luck. Mine is pretty much 100% upstairs and knows and tells me everything she can't do, which is not easy either. Especially if you are one of the only people going in - prime target. Although somebody has been singing my praises as she has been saying she is sorry I have to do so much. This is new! Today I got up at 7 and got home at 11 after shopping for 4 households and then staying with mum for a bit and sorting her bills and payments to her many people she employs. I am glad to hear your confinement is over Carole. Does that mean you can go anywhere? I haven't heard what your current rules are. The whole news here is taken up by the million questions, ideas, rules and queries everyone has in the UK, with different ones for England now. Its a lot to take in and I just hope that people stick to it so we can get closer to normality. Anyway hope this finds you all ok and managing love Lily xxx ... View more

Hi everyone how are you? Carole I loved the bird photos thank you. Not sure I have ever seen one of them so possibly native to France. Thank you I think I have mum over the worst now but she is finding being told she cannot send flowers disappointing when she cannot go herself due to restricted numbers as well as her lack of mobility of course. I didn't think it would hurt to let her as there will only be one flower arrangement. She is a bit low so I am glad it is not raining as that gets her on the best of days!  I hope the time passes quickly until you get someone back in the house. Everyone over is crazy home baking, could you plan something nice to freeze? I am sure homemade diabetic food is much better than bought items.  Take care x Lisa how are you getting on? I hope everyone has stayed well and safe. Nicky yes thank you, I needed to let off steam that's for sure 🙂   I found him fighting off an ant attack today with cloths stuffed in every hole he thought they might come out of. He had also taken 3 days of tablets and was rather excitable ha ha. We are managing ok with family all helping and actually the place is so much cleaner. So what were they doing? How are  things progressing with your inlaws? Are you able to set a funeral date yet? Its so much harder when you can't go through that stage and feel in limbo. Since then I have heard of another couple who went like that 2 weeks apart and they have said a broken heart. Sad but quite special too. My aunt's is in just over a week so they were fortunate to find room so soon, as you say only 10 allowed and one is the vicar so 9 relatives and none of us can go as it is a large family. In a way it make sit easier being told none of us can go, rather than go through guilt/worry about contacts. Have you need able to have chemo yet? I hope you have been able to get the next one in and that the injections worked to boost your system. Do you think you will have to have them each time now? I  believe many of them you can do yourself if you feel up to it.  I have been quite happy working at home as it has meant I am near for any of the calamities my folks get themselves in from time to time. I feel quite anxious about news about teachers going back but the unions are involved now which will probably settle things or stop them. I do want to be back to work and help the kids but I am going to get so many contacts I fear I will start my own epidemic amongst my nearest and dearest. I wait to see what happens. Hope you are all well love Lily xxx   ... View more

Hello everyone, I hope this finds you all ok. I am sorry I haven't been on here sooner, my days all seem to blurring together. I like to do the Thursday clap and then missed it this week because I hadn't remembered it was Thursday, so annoyed with myself.  I can hardly believe it has been over a month with just us in the house almost 24/7. We have had a lot of construction going on in the garden to keep s busy. He has no work as he is furloughed so we kept thinking up projects to keep him busy. He has been running for miles or cycling in his exercise time to try to get rid of some of his energy. Reminds me of the gs who have to run off their energy! It seems tougher to be at home with nothing workwise to do than being really busy like Victor and I are. I have never had so many meals and snacks each day in my life, so unlikely my work trousers will do up when I go back. Still they break up the day and we all sit and have them together, in the garden until this rain turned up. I know its good for the garden but I preferred it hot. This week my Aunty died, she was in a care home and had been in bad health for some time so it was not a shock but it was as she had got better after the same thing so many times. I had to drive over to tell mum the next day as I didn't want to hear the news at night and then be alone. It was a shock and she was fine, then very odd and then tearful much later. As you unfortunately know too Nick, funerals are very difficult at the moment. I know so many people now who have lost oldies, its wiping a generation out 😞   So we don't know if we can go. I am hesitant as her siblings cannot go out the house, let alone to a gathering. If I represent them, then am I risking bringing something back. In a way it will be easier if I am told there is not enough room for me to go, especially as there will be several people there who are working in a covid area of a hospital. Does it sound mean to not take the risk? So I join the many who have lost people. Nicky how were the arrangements made for your inlaws? Have they been able to arrange services? Its a difficult time anyway, but so much harder at the moment. Mum has been keeping me very busy, so its trying to juggle online work with her. I now have a code for my uncle as he is shielded and I have to input information about him to the NHS every week. Its bizarre but he is the highest level risk, even though he doesn't know it and keeps knocking on people's doors! Mum would fall apart if he went too. I have been so mad with people on the tv talking about the charities helping people. I am really really glad they are of course but why did all his have to pack up and go home? I still don't understand how they can tell someone of the highest risk category  that they will be back in June. I have had numerous phone calls from people and volunteers to check on him. Most of them tell me he can go on a website where there is lots of information. Information cannot feed you, bath you or sit and talk to you. He has never owned a mobile or a computer. He can't cook for himself and they can drop food 2 metres from the door to cook for himself. They can't ask what he would like so they send coffee when he only drinks tea. They ask me questions about if he is self distancing and if he knows what the virus is and then get all flustered when I say no he has dementia. They ask me if he can fill a health form in every day or if I can do it every day. The dr asks me to monitor him when he goes blue and tells me I need to sit there and monitor him, when she is 400 metres away and is the one with the medical knowledge. I just don't get how all of these organisations and all the volunteers and everything so wonderful people are doing, but his all go home, because of the risk of working. Sorry I will shut up now but I am start to lose my rag with people asking me questions and not doing anything. He deserves so much more. Nicky have you been able to have the next dose? I have lost track of days to know if you have  been or will be recovering from the s/e at the moment. I hope it all went smoothly as possible and you didn't feel at risk of contacts during the time out.  Keep me posted about how you are doing. Its so difficult for all of us to not see people too. ED brought us a cake as a present today and the littles were in the care. He was beaming away and I was glad he still recognised me. I managedto throw some sweets through the window without getting too close and gd was very excited. Ed is very germ conscious so we will see if it survives her antibac cleaning. I think she cleans all of her shopping. The family all seem to react in different ways so some will shout from the road and others are totally hidden away. We all go on houseparty and are having family bakeoffs and most recently a drawing competition where everyone had to draw something. They are very arty so I was embarrassed by my terrible attempt and their kind comments lol. The gc are all so busy nd their schools have been phoning every week and dropping off their work for the tinies. Its so hard for ones who have not been at school long or who are changing schools in September and missing all the lovely end of school events like trips away. Teachers have been sending them videos to keep in touch. Eldest gs wishes they wouldn't as he is totally swamped with work. He is expected to do well academically so he is really getting a lot. I don't think he quite comprehends that if he does everything, he automatically gets sent even more each week, as they can never have nothing to do. He is conscientious and doesn't like to leave anything! Have nay of you been trying something new? I know a few people have decided to learn a language or to play an instrument. I learnt piano but have not played for years. Might have a try this week. What are all your hobbies when youget time for them?  Well I will buzz off as I feel like I sent an angry post so I am sorry and I m in admiration of those many people out there who are helping. Bless them. Love Lily xx ... View more

Hi Ladies hope you are all keeping safe and well away from the invisible enemy. Carole I can't believe you have another condition poor you. How on earth will you do physio and you mentioned 1 metre, we are 2 metres away but perhaps you just mistyped? That will be very quiet without Mr P. I think you need to learn dog language so you can woof at each other 🙂 Having a paper document to go out really scares me as it makes me think of terrible times when people had to have them. Do you know of any people who have cv19? I just wondered if it is around your area. I hope not. We seem to be having more in our local hospitals after a quiet spell considering we are not that far from London. Our friends in London are not venturing out at all and say they are really scared to go anywhere near public transport. Like a lot of folk in cities they are in a flat so no garden at all to get out in. I try not to mention ours when we speak but why is it that if you try not to say something, it just flipping comes out your mouth before you know it!!  Lisa has the lovely hot weather got to your part of the world? I am getting a tan in April!! Never had so many bbqs. Nicky I am sorry your counts were too low. I always believed eggs helped mine.. I also remember nuts and apricots are things that help. trying to remember which type of nut in particular. I hope you will be good for your next one. I don't blame you for locking yourself in and think I would too. Its easier with me for my 2 oldies because they have told me they want me to visit and accept the risk but for you its so much more complicated. We don't want you to get it after this enormous battle you have had with bc and being on chemo wrecks your immune system for a number of days especially. Watching the tv adverts could you order a portal for her so she can see you and chat? They look really good for every day chat but not sure how expensive they are. Mum gets depressed very quickly if I don't se her too. Your brothers can visit to help an elderly relative from what I understand, so maybe to put new light bulbs in and fix something visit would be fine, plus shopping. I really think they are allowed to do this. I am ok but not dread the day one of has it and then have to wait to see if I've given it to the oldies too 😞   However, they will definitely both kick the bucket by starving if I don't go, so I don't have to make a choice. I have to go. My girls are now part of his housework care team. You would laugh as my grandma never believed in wasting anything. So if I did a bit of housework for her, she would get me a cloth and it always turned out to be someone's old pants 😞   I sent them a text today listing jobs to do and what cleaning materials I had bought, including a big roll of j cloths. Back came the reply, thank god I thought I was going to get his old pants :). I know what you mean about all the other shopping items. I would really like some disposable gloves but have none and can't find any and really don't want to hunt through lots of shops. I can't remember when I last saw hand sanitiser so just what I have left over and hand wash is a bit hit and miss in our shops too. For paracetamol Tesco hide them behind the pharmacy counter of the bigger ones and you have to go up and ask. They are 65p but like gold dust these days. I was thinking of raiding mum's 100 a month tub if I get desperate but still got some left at the moment. I really miss being able to go to the bakery to choose cakes and to eat out. They say restaurants will be the last to re-open. I think you will have to book weeks ahead when they do. Either that or everyone will be too scared to go still. Nicky I know how your daughter feels and I find myself just saying I am buying for 3 people as my trolley is quite full. This week at least most people were on their own except a woman with a tiny baby in a sling with a blanket over it. It was worrying to see a little one out in the supermarket. They are much quieter these days, no screaming.  Nick get munching good stuff and fingers crossed your counts will go up. What are the side effects of this one like? Hope not too horrible buddy. Hugs to all reading love Lily xxx ... View more