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.
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
Hi all, it's been a while since I last looked in, Nicky so sorry that your scan wasn't what you expected but hopefully, you and your Oncologist will have a plan of action. Are you feeling ok except for this news? I'm hoping that you are still enjoying some nice walks and visits to the family and grandson.
Lily I think you must be back at work now, it seems a bit daft to me to open up schools again so near to the summer holidays, what are your views?
Lisa nice to hear from you and it sounds like you and your brother are keeping busy, especially with the garden project. The picture didn't seem to appear?
Things ticking over here, I wish I felt a bit better as I am so tired, and almost every day have to have a siesta, and even then finding myself nodding off in the evening. My heart check was fine, although BP a bit high at the time which I think is just white coat syndrome. The last blood test I had still shows a positive for an auto immune disease so I think I will have to see my dr for a referral to another centre, specifically for auto immune illness. The hospital I went to is a general hospital, but there is a specific clinic at Toulouse. I've been having physio for my hand problem which is just not helping.
Our raised bed veggies are doing well, except for our beef tomatoes. These look pretty poorly, even though we keep feeding them.
Since the end of May our weather has been very changeable, like spring showers really but temperatures are not as warm as they should be.
Take care all and keep safe. Well I had better get on with checking the garden, making sure no bugs like cabbage butterflies have laid their caterpillars on my curly Kale 🤣
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
Take care nicky and let us have any update when you can xx here's hoping for some sun at the weekend xx
Yes it does deserve a bloody post! However I have things to investigate and treatments to sort out so will report back when I know more. So far my oncologist has been very proactive so I have changed my opinion of him since we first met last year and is doing all he can to get second opinions and informed choices. Am coping OK at present so no visits necessary, even if it were possible!
Will be in touch again
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
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
Hi all, sorry for my absence I've been utterly useless in checking in but must try harder...
Nicky so sorry to hear your news, I hope they find anothet treatment to try for you xx must be lovely seeing family xx
Lily, a poodle how lovely. Ha all my friends keep saying same with kids their lives revolve around food!!
Carole, hope pool warms up soon and you can get in too... Oh too early in morning for me to read the pooches food regime.
Nothing much to report here, I'm okay, doing better had anxiety at first but it's because working loads hours, my boss left and majority of work was covid stuff and lots still is so was working it, news, chats so it's been hectic... Been doing food shops for me and parents too, hate that and hating all these protests and wondering if lockdown will come back. My fear is parents as we all do I think, dad could be going back to work st hospital which worries me as overweight, over 70, diabetic, legionaires disease and got 2 heart scans tomorrow... Working as a porter at hospital will worry me. But on plus side my jewellery room is converted into office, and brother has been working on my garden which has been a massive project and run out of my holiday funds. This is a wee pic of a little space at side of house I wasn't doing but then had idea and for 100 quid not bad and upcycled old furniture I was sending to skip...
Unfortunately the latest chemo has not done what it was meant to which is why I've been absent for a while - getting scan reports and checking out what happens next. so, at present I am back onto hormonal treatment and will see how things go. Obviously not what I wanted to hear but not unexpected as once you've been on as many treatment lines as I have they do become less effective. So, we soldier on!
On separate things I have been able to visit my Mum which, after some 14 weeks or so (I's stopped going once I started on chemo in early March) that has been nice, and good for her mental health as she has struggled with anxiety on and off for the past few weeks. A couple of visits where we have sat in the garden and had a cup of tea, all appropriately distanced of course. Plus the girls have both visited and we all (well, 4 of us) went there over the weekend for a picnic and a chat for a couple of hours, again some form of normality for her. We have been out for walks with grandson and odd members of their household but at least can all meet up if we want to in the garden or at the park without recriminations. We have got used to sitting and walking apart!
Other than that nothing interesting!
theres my Tesco delivery, must dash.
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
I see that 6 members of a family can now meet with social distancing so hoping Lily and Nicky can at last see their children and grand children?
Lily our dogs have been raw fed for over a year now, they love it. I order from a frozen food supplier and collect once a month. We did buy a second hand freezer to keep their food in. A raw food diet mainly consists (for ours) protein mince, offal in liver, another secreting organ which is usually a bit of kidney, bone as in duck necks (it can be quite scary at first to hear them crunching away, but it's excellent for their teeth, and as long as bones aren't cooked, no problems). Sometimes when we can get them they also have quails, usually sawed in half as one whole one is too much, sometimes tongue, sometimes brain. It just depends on what I can get. They also have a frozen sardine each day (Aero won't eat them if thawed) this is for their omega 3. The amount they have each meal (x 2) depends upon the dogs weight. As a treat when they go to bed at night they also have a day old chick, complete with organs etc. Sorry if too much information. For your poodle, if you have a whizzer/liquidiser you could put all the food in and whizz it down to liquid. I do this when I make them a bone broth, all the bones of a cooked chicken, but slow cooked and liquidised to form a paste which sets and ours absolutely love it. You could try all the different ingredients blended down until she is able to eat bigger bits. Bones need to be crunched for the teeth cleaning.Hope that helps but don't hesitate to ask if you have questions. It can be a bit of a hassle, but I wouldn't go back to "ordinary" dog food now. Ours also eat a variety of veg and fruit. Congratulations on your new addition. It will probably be a while before she gets used to it. Sorry to hear you still have some family problems. I speak to my Mum every couple of days via whats app, which is good as I can show her around our home and garden, and all the pets. Our veg plants are doing really well and we've had to take the polytunnel down now as temperature is just too hot at nearly 30 degrees for the last week.
The pool is up and running but at the moment only the dogs are swimming, it is still a bit too chilly for us. I will post a photo of Aero in the pool.
As for what we can now do/not do, we can go out freely without filling in any forms but are only allowed to travel within a 100 km distance. We have to wear masks in shops and other places. Restaurants and cafes will open next week but with a limited number of people and social distancing applies.
Mr P returns to work next Wednesday which seems to be ok for the moment.
Nicky you must be relaxed about seeing your girls soon, although being in the ultra vulnerable group do you have to hold back for a bit longer? Has your tummy eased up a bit? I remember taking ginger, and also peppermint in water to help digestion.
Lisa, where are you and how are you?
So that's it from me for now, weather is gorgeous at the moment, in fact a bit too hot.
Take care and stay safe, Love Carole xxx
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
Yes, this self isolating does drag on and on doesn’t it?
When I was told at the beginning about being one of the extremely vulnerable group and I had to shield for 12 weeks it sounded so bad. However as soon as everyone had to self isolate it didn’t seem such a long time and everyone was in the same boat, other than not really being able to go out of the house. We haven’t stuck to that as we have been having very self isolating walks! So the only thing we have been doing different to the general population is not going to any shops. So, what happens next? That’s when life will get difficult for us as everyone else is able to do more and I’m sure the government doesn’t yet have a plan about the shielded group . There will be such an uproar, there is already with the over 70s in newspapers and other articles, so we will have to hope we are not forgotten about. In reality this is the group that need the protection of absolute shopping times etc whereas for most of the rest of the population the risk is very low, I think there have been only about 500 deaths in total for all under 45s. Something that can happen with any virus or illness where someone reacts unusually to it and it’s more severe than expected. I expect you will be nervous about going back Lily due to the contact that may happen and, hate to say it, the age group you are in plus as you’ve said the increased risk of taking it home to the very vulnerable group you currently look after. What a dilemma.
I haven’t seen my Mum in person since the start of March when I began chemo and before the lockdown started. Of course there would be absolute minimum risk now as she hasnt been anywhere and gets food etc delivered to her by volunteers and neighbours who have been great. I will have to decide if I should as we are now allowed to travel out for other than essential journeys. My problem comes with what would happen if my car broke down as she lives about 20 mins away. So we will see. She has had quite a few ups and downs mentally as the isolation is tough. We all chat with her as a family daily or on extra FaceTime calls but it’s not quite the same. She is realistic about what she needs to do and now walks a bit further than she did, just to get a change of scenery but doesn’t want to go in any shops. What a strange time we are living in.
I am due my next treatment next week so have some time away from the hospitals in between, however this week I have a CT but it’s at a different, private hospital which is away from the coronavirus threat of the main one. In fact it’s just down the road from where we live as there’s been a private hospital there for many years on the site of a previous cottage hospital. So not too far to go.
The chemo has been OK but really bad with your stomach so I’ve suffered lots of aches and cramps. Not very pleasant.
Anyway, enjoy this weeks sun, it’s looking good.
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
I'm pleased you enjoyed the photos Lily, how are you and your family doing?
I'm sorry your Mum is suffering a bit. My mum keeps saying she can't go out as they have to stay in. Now she hasn't been outside since the day she arrived. Where is the logic in that?. I think in her mind she remembers the shops she used to walk to more than 3 years ago, but forgets she can't do that now as she's too fragile and doesn't live near any shops now. Dementia is so sad, but today she mentioned how you never forget your babies when they were born.
So it's all same here, our confinement has finished and in the supermarkets things are back to normal. I had to mention to two people on Saturday to "respecter le distance " as they came too near to me for distance".
So, it remains for me to say how much I hope you're all doing well. Love Carole xxx
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
I'm so sorry it's been a while since my last post, where does the time go?
Nicky you've been having a rough time, what with in laws, funerals to be arranged, and postponing your 2 chemos. Will you ever find out if it was Covid 19 that caused the death of FIL? It has been reported that broken heart syndrome is a definite cause of some deaths, strangely it happens to women more than men. If ever there was a bad time to die it must be at the current time.
Lily I'm sorry to hear about your Aunt, and the situation with your Uncle must be an enormous worry for you, being the primary carer.
We are still in lockdown, although I have noticed that there seem to be more shops open than before. I find this quite worrying, how can normal life ever resume? I always wear a mask when I go out, only a home made one but better than nothing. I also carry a small bucket, water and soap to wash my hands after every shop.
I am desperate for a hair cut, how about you ladies? Mr P left for work yesterday, a long journey for him as the only way he could go was via Calais/Dover. So a 10 hour drive this side, and then a 2 hour drive UK side. Hopefully by the time he returns there will be an easier way for him. So, after such a long time his absence has hit me quite hard. Never mind, it's only 2 weeks.
I personally don't know anyone who has, or had Covid. ED who works in a Care Home has had some deaths. I'm quite worried about her as she is "frontline". Our Son and SIL have both been furlowed. Our region in France had a panic a couple of days ago when the government published a latest map showing our area as being in the red. In fact the figures were wrong and we are in green which is good. Phew. Boy did they have to apologise for the error.
To end I'm adding a couple of bird photos. A woodpecker and a hoopee, both are one of a pair that we see every day in our garden. On that note, take care and stay safe.
As you know this is the place to let off steam for whatever reason. Things you can’t say to others or just don’t want to burden them so keep doing it if it helps.
As you say what a dreadful situation your uncle has been left in, hardly understanding of his condition and state of mind is it? Despite the fact he must have been on the adult services radar of his local council if he previously had carers assigned to him. What a strain on you. No wonder you are fuming.
Sorry to hear about your aunt. It really does seem to bulldoze it’s way through care homes doesn’t it. Having said that anyone of a greater age has a reduced immune system and most have at least one underlying condition which is when the virus is so deadly.
We still have the long drawn out saga of parents in law which is why there’s been no update from me. Post mortem on FIL was done about 10 days ago but still no death certificate ordered, I think the GP has to do that after a medical certificate is produced. Then MIL also had to have a post motel which only happened this week. FIL did have COVID 19 but I’m not sure he died of it or with it. MIL was, as expected, coronary heart disease with further lung issues so it sounds like the died of a broken heart probably did apply to her. With any luck both death certificates will be issued next week so a funeral can be arranged, only a month or more after their deaths. No wonder the government has had problems reporting the number of deaths in care homes. So we are in limbo land again. It seems the individual local authority decides on the number of people allowed to attend a funeral so we have yet to find out how many but it seems capped at 10. All distanced 2m outside, no inside ceremony so if you were to go to your aunts, Lily, you would drive there on your own and stand outside at least 2m away from everyone else so it would be unlikely you would be exposed to anything.
As to my treatment I have had 2 delays due to low bloods. The hospital and oncology team has been really good even getting a delivery from pharmacy to me by car (an injection to boost my blood counts) within24 hours so I didn’t need to go back to the hospital to pick it up. I only go for blood tests, the department is absolutely deserted, and that’s it everything else is by phone and chemo unit is now isolated in a private hospital.
Hope you are all keeping safe. Chin up chickens
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
btw it seems to be this thread that is upside down! Maybe this whole section of the forum as well? When I post on the secondaries part it’s all in the right order. Typical that this is probably the longest thread on the forum and we have to try to get to the last post to read it. Or we could just write any random comments by just replying to the 1st one, without reading the last post that was done ha ha.
Anyway I’ve decided to amend my government guidance/registration form to say I can’t get help as I think it takes a couple of weeks or more to get my details updated at the supermarkets by which time I may not have any shoppers about to help me, or only help me once a week, that’s if nurseries and certain workers start going back. So I am forward planning rather than taking advantage of it right now. With YD at her sisters she does have time to do it at the moment so I will continue to use her, and see her for a chat when she drops it off. She doesn’t like taking the boy toddler shopping for the same reason as you pointed out Lily with a little one so she can only go when she’s not on childminding duty .
As to Mum she seems to have a minor UTI, or that’s what she thinks and the Dr has prescribed a short course of antibiotics for. She has also had a chat with a GP about depression so she is on their radar. I think because she is so mobile and ‘with it’ it’s affecting her because in normal times she would still be out and about doing her exercise classes and bowls etc. If she was normally housebound it wouldn’t be much different other than people not visiting so she really has lost her freedom and social contact. She seemed more cheerful yesterday. Unfortunately, although my brothers could visit they are both between 1 and a half or 3 and a half hours away, so not local at all! Hence why it is me that is the point of contact and I’m still 30mins away (always have been) so there’s no relatives able to visit at all. She does have local volunteers and neighbours but of course they just put things on the doormat and run away! So hardly a conversation to be had anywhere.
My chemo is doable, although this last time I had awful stomach cramps for a day or so which freaked me out, until I read that this does seem to be one of those less known side effects that they never warn you about! They stopped after a day or so but, boy, were they painful and of course not good when you’re still trying to sleep after coming off the steroid days! I have remembered that mushrooms seem to be a boost for wbc so I’ll eat a few more of those plus a few years back I did buy an supplement that I’d been told about (from various knowledgeable sources) so I may have a couple of them as a quick boost as well. Fingers crossed it goes ahead next week.
Carole, I can imagine that you are not looking forward to Mr P going back to work, especially as he’s been there for so long. You must be used to his company this time whereas I expect you are normally only expecting him there for a set number of days so have your own routine. A tough time for everyone. Good to hear you are becoming market gardeners though ha ha. Well done you, just a few chickens and a pig and you can become Tom and Barbara.
Take care all, Lisa, let us know how you and your folks are coping. Hoping everyone is keeping safe and well.
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
Hello ladies, Nicky and Lily my heart goes out to you, you're both very much under pressure and at the moment I don't know what the solution is. Like you Nicky, when we walk the dogs we usually don't meet another person so from that point of view we are safe. However, our shops are generally packed and although people try to keep a metre away it does become very difficult. So I wear a home made mask which gets washed every time I've worn it and we carry water, soap and kitchen towels in the car so every time we've been shopping we can wash our hands. Just to make sure we have also got some alcohol wipes. There isn't much more we can do to protect ourselves, and yes even it's not for food there are household items that need to be bought.
For my hands tomorrow I am starting physio sessions, my diabetic dr thinks it is capsulitis of the finger joints which is a common problem for the shoulder in diabetics, so it makes sense it could be the problem with my hands. I hope this is a solution.
We haven't seen YD for weeks, except by video calls, she is worried if she visits (and she's not really allowed to at the moment) she may bring it to us. She is managing to keep working via video calls, and has applied to be a teacher of English.
Mr P returns to work on 6 May. TBH I am dreading it. Life in isolation is hard when the two of us are here but on my own..... When we go out we still have to complete a document in case the police are about.
On a positive note we decided to buy a small polytunnel, and have been busy sowing seeds and plants. Hope to have cabbage, brussel sprouts, kale, potatoes, onions, lettuce, tomatoes and broccoli. With green veg we always have a problem with the cabbage butterfly, the caterpillars completely shed the plants. So hoping having a polytunnel will prevent that.
I speak to my Mum almost every day but conversations with her are becoming more difficult. She is so forgetful, chatting is always repeated. At the moment she is complaining about the food, being bored because she can't go out but she forgets that she never went out anyway.
Well take care everyone, stay safe and hoping chemo isn't too unkind for you Nicky. xxx
What a terrible time you are having with your uncle. One of the forgotten ‘victims’ of this situation who isn’t getting the help he needs just to live his life - and you’re having to step in - no wonder you needed to let off steam. Although nothing like this I heard from my brother yesterday that my Mum is feeling very down. She felt like this just after Christmas when all the excitement had gone away and she was on her own in a dull January. At that time I was able to visit her, as we all were, but now I’m the closest relative and really unable to go due to my compromised immune system. And I know it’s compromised as my wbc count and neutrophils are down and I can have today’s chemo. My brothers wouldn’t be allowed to travel to visit and obviously no one who is currently helping her with her shopping etc would be able to sit with her and keep her company for a while. So another older person being hit hard by the lockdown in her case but the lack of carers for your relative. Plus you do all the running around for your Mum, I don’t know how you do it. Take a deep breath and keep safe!
So, my chemo is postponed, it’s a hard hitting chemo that’s for sure. So a week to get them up to the right levels and try again. It’s not as if I can enjoy the extra week off as I have done in the past, it’s just the same old stuff - like Groundhog Day ha ha.
Ive given up on supermarkets but thanks for your tips. It was decided when YD came home from London (at the time the coronavirus hit spot!) that she should stay with her sister rather than us as we are in the vulnerable group. As it turns out she was fine, as they all have been so far, but I still don’t need her here is she is going into shops still, OH is as self isolated as I am so we have no outside exposure other than when we go for a walk and pass within 20 feet of another walker. We do see her as she drops stuff off and we have a chat and that’s probably the best solution plus she’s helping with childcare of grandson as ED is working from home and SIL is back at work. In fact we see her more than we ever did! So it works well so far but on the days she has GS to look after she doesn’t go shopping as she doesn’t want to expose him to anything plus if she’s buying for their household as well it can be a big shop. She’s even had comments about her ‘holding a party’ by some nosy people in the shops. She now tells them she’s buying for 2 households to shut them up. However when she does return to London (whenever that will be) I will still be in lockdown mode which is when I need to get organised as ED couldn’t really do it as she will be physically at work rather than working from home. I have had lots of tips from ladies in the same position as me, I just need to change my status as such on the government website (for us extremely vulnerable group) to say I can’t get food bought for me any more. As I’ve said to that group I can get certain food items, from local delivery services (but at a cost!) but it’s all the bits you buy from supermarkets that you need such as cleaning, laundry, paracetamol etc that no one else delivers, it’s not just food that you buy is it?
Anyway, a small rant from me, nothing like the pressure you’re under Lily- and having to go back to online teaching as well!
Hooe everyone in your family, and everyone else’s on here, are keeping safe.
Hi everyone, how are you? Back to work for me in the morning, in my online classroom. Our school is open for children of key workers but I'm so busy I have said I can't manage to do it at the moment. They seem to have lots of volunteers and the risk to pass it on is too high especially for the oldies, who are keeping me very busy with one disaster after another this week. Victor has had a letter too and I was surprised how much it affected him. I think the longer you stay in, the more concerned you become about venturing out. I am in and out non stop with my oldies care and shopping so no choice.
Nicky, thanks for that and I have had calls and made calls myself but its no good for him, its focused at people who are capable but not allowed out to get things they need. I know everyone talks about the volunteers and don't get me wrong, I do think it is marvellous but the help they offer stops 2 metres from the front door. There is no help for his sort of problem at all. Its not the staff self-isolating either, they have suspended all his personal care, his house cleaning and his clothes washing. Just sent a letter with a few days notice saying will be back in June maybe. So yes he is shielded, in that very first letter group because of end stage lung disease, also has dementia so doesn't remember there even is a virus let alone what self distancing is and now his support package have dropped him. One was the care team set up by his social worker when he was hospitalised and the other team are from Age Uk, we pay for both. He is travelling back in time and I think we are currently around 1960s so no idea who he thinks I am. He does not recognise a microwave and would not know what it was. He is very happy living in his childhood home as everything is familiar but needs help to live independently. I have had calls from volunteers to offer free food like tins to make his own meals (he can't), to collect meds (they are monthly delivery we have already paid for), anything as long as its 2 metres from the outside of his door. I don't think there is anything else. The gp would not come out when he couldn't breathe and I had to stay there and monitor him and talk to the surgery by phone. The gp was 300 metres from his home! They said they only do a talk on the phone or 999 ambulances and thought too risky for him to chance go in. Just had another volunteer phone to ask if he understands and is following the guidelines. About 20 questions. Really? What part of dementia confused you? They asked if he could go online and enter daily questions about his health. What part of dementia confused you? They actually laughed out loud when I said he doesn't know what a computer is and has never owned one. Anyway that's how the scheme has worked out for him. Everyone is shocked and thinks its wrong but still nothing! I am relying on family and paying carers I know through mum's care firm privately, to keep him going. Its not a very easy time to find people and if work starts its going to be a disaster. Also it means he is now getting contacts from a lot of young children through family doing things for him so shielding is out the window and we are on fingers crossed luck. I can see from your post that you have a lot of challenges too. I thought your daughter was back with you at home, so had hoped you might have a few people to help with the food shop and other things. I hope you can find some solution to help you out. Have you managed to get any deliveries yet? The normal ones come on line each day as they release another day, one at a time. If you need to know how, I can text you as we have been managing to get some to try to keep me from taking the virus in to mum and uncle. Tesco are 3 weeks ahead but asda are only one week ahead. Also try click and collect as you drive up and they just put the bags in your boot for you. Its a little safe trip out as well as charges your car battery so it doesn't go flat. I would say find a store which does not service a really busy area or somewhere that has 2 big supermarkets close and target them. Phone the store and ask what time they put new slots online and then sit up and get ready. I am happy to help any more if I can. We have all been trying to work it out from people we know who were successful and not too bad now. Everyone I talk to is going crazy with issues and problems, not sure if anyone is finding this an easy time. Mostly I worry for people like you and other friends who are on chemo or much older. I worry about the baby too, ED is really scared stiff as he's been very poorly for weeks already. I miss seeing them all but at least we have mobiles. Carole how are you and Lisa? Keep your chins up everyone and most of all keep those chins safe. Sorry I let off steam, feeling really under pressure at times knowing I will most likely be the one who takes the virus in to them 😞
Just another tip to get to the end of the thread, which I only found out just now when looking for Lily’s latest post. Press the double > which is the end of the page numbers, it gets you straight to the last page and then you can scroll down to the last - or should I say latest - post.
Lily, sorry to hear about the carers, I think it’s happening all over the place where carers are self isolating and therefore cover can’t be guaranteed. If your uncle is in the extremely vulnerable group he will have been contacted by the Gov about getting help. Maybe one of the volunteers can do it? Or at least get his shopping so you can just go about visiting him if that is what is needed. No idea if this would help you but considering there are so many volunteers for the scheme hopefully there is one on his area.
I did try your tip about getting a Tesco delivery slot. I got through to them, I wasn’t on their list (grr) but they were willing to add me. However when I got to question 2- do you have anyone who can help you - I was refused! I agree that it should be the most vulnerable who get the delivery slots but seeing as there are now this 750,000 volunteers available I’m assuming no one is in a position where someone can’t get their shopping done for them. Just because a have a daughter (who is having to do mine on top of their households) who can do it when I ask shouldn’t stop me from securing a delivery slot for all the grocery type products that I could get on a home delivery. Where are all the other delivery slots going to? People who can still get to the shops,even when they have secured a home delivery? Grrr. The supermarkets have not been good about this at all. So, unless I say I haven’t got anyone (which would be a lie) I still can’t get essentials delivered to me and I don’t need to sign up to the governments essential foods delivery either, that really is for people who can’t get anything, but obviously doesn’t cover other essentials like the things you run out of in a month. Very annoyed.
Anyway better news is that our chemo unit has now transferred to a private hospital so it’s away from the main A and E. I will still wear my PPE (!) as I have to face the nurses but hopefully there is less risk. It is in Winchester though so quite a drive - hooray, a day out with a proper reason, ha ha. I haven’t gone further than our local hospital in weeks, months even so at least the car will get a good run out when I go next week.
Hi everyone, hope you managed to find some nice time during the Easter weekend. We were a little frustrated as we should have been away and have never ever managed to get such a good week for weather. Just coming up for Mds first anniversary and you may recall it was so warm she got married outside. Poor couples this year will not have been so lucky and I think when people plan for so long ahead it must be very upsetting. Lisa, if you haven't spotted it, the quick way to get to the last page is to scroll straight to the bottom and click on the last page, which is 158 at the moment. That takes you straight to the end. It used to do this after some people posted as you could choose ascending or descending but now some twit has got us stuck. Carole I think we are just waiting for our next lock in date, due any time now. I have never watched the news so much in my life and we all watch the daily briefing now, without fail. Its puzzling how so many countries are reacting differently and the giant jumps in numbers like Russia was suddenly very bad today. Its difficult to know what comes next. I do think there is going to be evidence of better immunity in the population of some countries, either naturally occurring or through immunisation programmes, making a difference, as well as their current health policies on cv19. It is just getting into my area, which I sadly predicted correctly having tracked the changing stats coming our way, possibly out of London which is ahead of us in time for the virus and in easy commutable distance. I have been nagging the family to stay in even though I can't myself. Most people in our road have not budged at all and I feel bad every time I go out to sort the oldies out or get food for them and us. My uncle's care firms have both decided to abandon him completely despite him being a shielded person. They sent a letter giving me no notice at all so I have no choice but to keep going over. I have to stagger my visits to mum as I get all her shopping too, as I feel its a bit more risky to go straight from the shop to them or from one straight to the other's home. So I am out a number of days looking after someone or getting their food, meds, etc. Victor has not been anywhere at all but son uses his hour to do a big run or cycle somewhere and back. Its a strange time we live in. I hope all of you and your families can stay safe and well through this worrying time.
By the way I have been sending letters to the grands and they absolutely love getting post. So if you haven't thought of it why not send one to the children in the family. I send postcards when we are on holiday too, even though we get back before them. The excitement of post is getting forgotten by this generation. Two of mine were so excited they drew a thank you poster for their posty and stuck it on the door for him. So I guess that is a hint that they hope he will bring more!! Love Lily xxx
We are now in confinement for another 4 weeks until 11 may.
It has to be done I think even though getting a bit much now. This virus has to be stopped somehow.
Stay safe buddies and hope you had a nice Easter even though not seeing children and grandchildren xxd
This current mess with the forum is very annoying. It’s happened before ie the oldest post is at the top and vice versa but I’m guessing they can’t get anyone in the technical team to resolve it. I brought it to the moderators attention with a post but not sure if anything is being done about it. Very frustrating for anyone trying to get support if they are newly diagnosed. There’s hardly any activity on the secondaries part and I’m sure that is because of the current forum mess, I don’t think we’ve all gone away!
Thanks for the tip about a Tesco Lily, I’ve had no communication so may have to resort to phoning. A task for next week I think.
Yes, it is deja vue about the deaths, similar time lag for my Dad but st least we had a death certificate to produce almost immediately whereas we don’t have anything yet for either of them. OHs family are really disorganised about getting on with the admin side of things so I’m keeping well out if it. I’ve offered the information that I had to find out (and it was a sharp learning curve!) and then stepped back as I really don’t need to go through any of it again especially when there’s 5 of them to ‘help’.
Enjoy the rest of the weekend. It’s been lovely up until now but much chillier today which I don’t mind as the nighttime temperature in our bedroom was already high and stopping me getting a good nights sleep.
nice to hear from everyone. Hope you are all manging to get through however you can. Carole glad he does not need an op as you really don't want to go anywhere near medical places at the moment for anything except a complete emergency. I pray I don't need the D as they are only seeing emergencies too. I guess it would be the same everywhere for that. If you take a pet to the vet apparently they take the dog out your car in the car park, sort it, then ring your mobile and transfer money/touch card. So I am trying to treat our dog's gammy eye myself but it is a bit grim. Left over effects from the op she had on her eye and nearly died as can't have NSAIDs. They found that out a bit too late. When will Mr P go back to the ferries? I don't even know if they are running a service, maybe very restricted? How about the rest of your family?
Lisa I feel for children and their birthdays but I think when we get back to normal there are going to be a lot of belated as well as new celebrations to enjoy. Better start saving now. My son says he has never been so well off as he cannot go out. I'm shocked how much a night out costs these days. I think its quite tough being with just Victor and I but not as tough as being in a house alone as he cannot work at present. He has been told this time is all his holiday more or less so he has money but will lose time to enjoy being let out, one day. So we have monopoly tournaments, wii golf and bowling, movie nights, online quizes etc every evening. A lot going on in the garden too as we have quite a lot of land, so never run out of jobs here. They are building a patio but we are now held up until a delivery arrives. Even more annoying the lawnmower got trapped in a closed repair shop, so that's another delivery to get a new one. What is going on at work currently Lisa? Are you in every day or working from home? Have you thought of fostering a little dog to keep you company, they are always calling out for people to stay with for a little while. Not sure I could ever give them up though. We are having a puppy this summer, just hoping all goes well as I have no idea how we will get it and get the jabs, etc. Our oldy is 9 and still likes to play so think she will enjoy the company and someone to wrestle with. The puppy pictures are so gorgeous but its still a while to go, fingers crossed all will be ok. I laughed at you spraying your shopping bags for mum and dad 🙂 . I hope they can stay safe and well so you can get back in there soon and give them a big hug. We have managed to get quite a few deliveries which is helping a lot. Victor hasn't been anywhere at all and I think it is concerning him as he doesn't like me going out either. No choice with my oldies and as I say to him someone has to go out and catch a wild pig and drag it home! He has been badly asthmatic and I think he will probably lock me out if I start coughing too much !!!
Nicky how are you getting on? I know several ladies still on chemo and they all worry about any possible contacts but I think the hospitals are on the ball with total separation of covid patients. I can see you are over the steroid mania now, do you get the red face? I always looked like I had a tan for a few days. Good to get out yes its been amazing weather really and I caught the sun this weekend a bit. We hit 22C one day, very fortunate. Not looking so good for next week though. I am getting a sense of deja vu from your posts as the same problems after you lost your dad. My dad too as you may remember the same happened to him after dying on holiday, makes it so much worse as you feel in limbo instead of moving to the expected service and grieving. The coroner's office must be so busy that I think it might be a wait for everyone. My local friend lost her mum but she lives in the Midlands. They are allowed 18 people to the funeral and the rulings on going to cremations were astonishingly different from down here. I wonder if that I part of why they have a bigger problem there. My mum worries as we were told nobody to a cremation and 10 to the outside part of a burial. She has to be cremated to go in with my dad, which are her wishes and the space is ready. She got in a panic. I told her she can sit on my mantlepiece in a jar until we can do it properly, which amused her no end. It won't be funny of course but she wanted to know she will get to meet her plan eventually. I hope your OH'S parents can soon be released and go on their final journey together. On the delivery front the people I know rang Tesco and they were put straight on the list and can now get deliveries. Although Tesco release slots 3 weeks ahead but with Asda it is only 1 week head so you can get a slot more quickly. my daughters are on the case telling me all this, as one was in quarantine for 2 weeks and added all her shopping on to my slot if she hadn't got one soon enough. I am trying to relax a little this fortnight as I have just the oldies and home with a bit of a rest from manic online teaching. This will get far worse as soon we have to try to mark/rank/grade all the year 11 students as well as getting lessons to everyone else. Can you imagine what it will be like. They will open their results knowing each teacher put that grade down, although there are other measures to modify this. I don't know exactly how it will pan out but I feel the potential for angry parents/students is very high!!!
Will leave that worry for another day. Take care and stay safe love Lily xxx
Hi all, so sorry for lack of posts it's taken me. Forever to get to the end post no idea what I've done lol.
Happy Easter all, a very different one for us all.
Nicky so sorry about OH parents I'm sure it feels unreal at the moment and sending you hugs virtually of course. thi is the bit about the virus that scares me about not being with people who are ill. We have a high rate here think due to older population and lots of idiots deciding to come to Cumbria as they thing it's quiet... I'm working hard but also doing things like baking for family and alternative gifts for Taylor's 11th birthday today and sitting in sun, ned a break this weekend. Lily like you finding the shopping experience awful as doing mine and parents so I look like a right greedy so and so, dropping odd at top of path and running back, so nice to see them, dad keeps asking why bags are wet I keep sanatising them lol. We are having takr out Sunday tea today as a treat to parents as bit upset at not seeing their Taylor on his birthday but I think they will be doing there daily exercise via their house to wave and say hello as live 10mins walk away xxx stay safe all and apologies for typos it keeps flipping back up the screen and don't have the will to scroll back and try and fix lol xxx
How are we all doing?
I had my treatment about 10 days ago so now on the better days of the cycle. Fingers crossed SEs have not been bad at all, let’s hope it stays that way.
Generally doing what everyone else is doing and keeping safe, just out for walks each day in this glorious weather.
No news from coroner about the in laws so no progress to be made regarding a funeral. At the moment funerals seem to be able to take place with a maximum of 10 family members present, outside, near the graveside, but who knows if that will change by the time the bodies are released for burial? A bit like when my Dad died and he had to be repatriated and nothing could be arranged until the UK coroner decided if a second post mortem was needed. A very surreal experience as it’s almost as if it hasn’t happened.
We are managing with our complete lockdown, getting shopping through daughters doing it and friends offering. We are lucky, I have had no communication from the supermarkets who are meant to contact everyone on the extremely vulnerable list - the government have shared it with them, so there’s no hope of getting a delivery which would be the best thing to stop having to get people doing my shopping for me when they have enough to do of their own. At least I get to chat to everyone when they drop it off - through the kitchen window of course, no outside contact at all! Gloves and bleach used to wipe everything before it gets into the kitchen as well.
Well, that’s my exciting update, hope everyone is getting the good weather an able to take a bit of ‘me’ time in the sun. There has to be some positives about this!
Gggrrrhh. Just lost quite a long post. So in brief we are all ok here. Mr p doesn't need an op just physio. All physios are closed atm so he is doing exercises as the surgeon said.
My hands are still pretty useless, they also need physio but all closed for now
On the positive side of lockdown we've discovered loads of box sets on iplayer, like Life on Mars and Gavin and stacey.
I'm currently watching Contagion on Netflix, with today's crisis it is very accurate.
Does anyone wear masks when out? We are unable to buy them here, so make do with scarves. I did a homemade mask from YouTube but it needs tweaking slightly.
Enjoy easter buddies and stay safe. XXX
Nicky yes I did read your post and replied but no idea where that has gone to. I get our very first page too which is confusing and annoying. Then go to the bottom and click the biggest number and eventually get here. I wonder if this post will stay. I was so shocked by your latest post. I cannot believe they have both gone together so quickly but I understand what you mean as they probably would have chosen it this way. Very hard for everyone left behind though to cope. My friend's mum has suddenly died too after a short spell in the hospice and I wonder how many oldies actually caught covid19 while being treated for something else as they would not understand the social distancing, or needed that closer care in their daily life to function. Her mum was not allowed to see any family at all in the time she was in hospital and was given the very unexpected news that she had weeks, while completely on her own, they were told by phone, so cruel. The local hospice allow one completely gowned visitor a day for 30 minutes. It wasn't weeks. Its been an even tougher time than usual. Such a cruel time for people to bear. My thoughts are with all of you at this sad time. How is your poor husband? I have no idea how they even carry out funerals after hearing that nobody can attend a cremation any more. Somebody told me a story of someone not allowed to go to the funeral of their young son, which is unbearable to think of.
On a brighter note the mask and gloves is a brilliant idea to keep you safe. I think I am a bit scared to go to the shop let alone the hospital I had an appointment and didn't go as I had a possible contact that day at school and didn't want to start a chain of contacts, so tried to ring to cancel. That was a joke, in an hour I went from caller 6 to caller 5, then had to go back to work. Then when I got home they had decided to close appointments early that day and every day, so it had closed. They have accepted my reason and will send another appointment but not sure I want to go as not urgent. Bit scared to even go there. My uncle is one of the highest risk with end stage copd and we have had the NHS letters and calls to offer help but they haven't quite been able to help him as the system will deliver food parcels for you to cook but he has dementia too so I had to have the cooker cut off as he nearly set the place alight. He cannot cook but has meals delivered and out on the table to make him eat it. I am stuffed if that company cannot work. Its not ideal and I have to go in too but he cannot be just left and care homes aren't doing too well either if I moved him. With both my oldies I am settling for quality rather than quantity of life in the decisions I make, with their permission. Mum will deliberately starve herself If I don't go in plus I do all her shopping and bills, etc. This is surprising the way she is with me at other times? Carole you would not be allowed to see her at all even if in this country I am afraid, as the care homes are losing people fast once the virus gets in from visitors or staff. Perhaps they would let you do a face to face call or a carer might let you send whatsapp pictures to each other if you asked? I send pictures of mum and I to the family who all had been visiting regularly. Its the best you can do sometimes. Yes Carole mine is the same when he is injured. They say that is why men are faring worse with covid19 because they smoke more and react less quickly. Poor Boris, I hope it goes well over the next few days too. My goddaughter works at St Thomas and I wonder if she will be involved in his care.
We tried out the exercises that a dr put online for you to try if you think you are getting the virus to help you recover. Have you all seen this and about not lying on your back too much as it is encouraging pneumonia to form? You can look it up if you want something positive you could do to help yourself. If not I will try to explain how to get it, if you let me know on here. How are you all feeling? I feel really quite scared at times and forget it at other times. I have to shop for 3 households so have to keep joining the long queue and hoping I don't take it back to everyone. No other choice with my 2 housebound, alone and unable to do anything. Carole it must have been upsetting to miss your visit. I could literally get to mine in 5 minutes but still can't see them 😞 Nicky you must be the same , missing this lovely time with them. Lisa missing seeing your parents and family too. Hopefully being busy at work will help you get through lonelier times at home at present. I have been thinking about everyone living alone and hope you are ok. I have so much work to do, I wonder how I ever got it done before! I've probably been getting up late and watching too much tv. Well I better finish here. My condolences to you and all the family Nicky. I can't quite get over the second news. It will be so difficult to arrange things too at present. Most of all you buddies keep yourselves nice and safe. We have faced worse but this is one we should also be careful about. Much love Lily xxx
Nicky i am so sorry to read about both your losses, at such a difficult time as this. I speak to my 93 year old Mum every day, often repeating the same conversation but I would be devastated that I would not be able to go to her. Also with you having to go through your treatment at such a distressing time. Big hugs.
So how are you Lily and Lisa?
I was due to visit the children in UK last weekend but of course that was cancelled so I thank the wonders of technology for at least being able to see them when we talk. It's also been weeks since we've seen YD. She is doing all her teaching via video chats, she's very worried about the Covid situation, well we are all worried about it but she's staying put as much as she can.
We are allowed out to go shopping, medical appointments, exercise but close to home, 1 km and only for an hour. We have to complete a declaration saying the reason why we are out. Lockdown has been pretty tough but thankfully the weather has been good so lots of gardening done.
Mr P is not returning to work today, not because of Covid but because he found out last week he has broken 3 bones in his wedding ring finger. This injury was actually done in January but as he didn't want to take time off sick he left it. Consequently our local dr thinks he's left it too long and nothing can be done for his painful hand and finger. We are seeing a hand trauma specialist tomorrow to see if it can be repaired. Silly man, not going to sort it out back in January! Lily and Nicky, are your husbands like that?
Well, that's it for now, but I wish you all to take care and stay safe. Love Carole xx
Im all confused as I can only get to our, Lily’s, very first post on this thread despite trying to access the latest post. Why do they keep ‘tweaking’ the forum, hmmmm. The other week all the Secondary BC threads were locked so no one could post a thing. How frustrating.
Anyway I am not sure if you’ve been able to read my post from last week but I have further sad news to add. OHs Mum also passed away last week, on Friday, 4 days after his Dad. A case of broken heart syndrome it seems. So a very sad time for the family although the only comfort is that they are together now and she would not have wanted to live for long grieving for her husband of so many years. The coronavirus situation of course makes it incredibly difficult for the family as they are not able to meet and comfort each other as everyone is still self isolating.
Just thought I’d let you know in case there’s a chance you get to read the latest posts!
Take care all of you, and yours.
Hi lovely ladies
Well I’m up bright and breezy owing to our old (but my current) friends steroids! They are a necessary evil with this new chemo. Generally SEs from 1st cycle weren’t too bad but had the second one yesterday after the week delay from last week. I was very grateful to have it given all the worry for us cancer patients as to what we can have an when. Out unit is running well at the moment with a lot less numbers in the chairs (in the ward and waiting room) as all consultations are over the phone now, except maybe urgent ones as there was someone in the waiting room who was seen by an oncologist yesterday. Also some treatments are being spaced out more so ladies, and gents, don’t need to come in so often such as Denosumab for bones. So a surprisingly quiet time. I wore my top of the range face mask which SIL had got me from his work and gloves and didn’t pass a soul getting from the front entrance up to the 5th floor - it’s that quiet! There’s also talk they are going to relocate the oncology service off site which will be a huge relief. I expect it’s for 2 reasons, 1 to free up a whole floor for COVID 19 cases and 2 to remove us most vulnerable, non medical cases from the epi centre! Talk of this happening before my next cycle in 3 weeks so fingers crossed. Lily, I have been anxious about my treatment as some reports are that it will stop or, for me, change to something that’s not quite as successful, however I am more reassured having had it this week and with the plans they are talking about at our hospital which sounds like the are ringfencing the service. Let’s hope that is the case.
In terms of how we’re dealing with things OH has been working from home since I started chemo 4 weeks ago and as I’m in the extremely vulnerable group (the 1.5million that the government have identified) we are completely self isolating, no shopping trips, just a walk a day, which even that we’re not meant to do but living in a sleepy village with open spaces within 100 yards we can do it without meeting anyone. So both daughters bring us our shopping and leave it outside the front door and we have a chat through a partially opened window. So it’s nice to see them but not give them a hug is difficult. We can also see grandson in a similar way but generally if he’s in the car. He seems happy just to see us and we chat a lot on video calls. At his age it’s not affecting him too much and he wouldn’t understand what’s going on. Luckily they moved house last year so have a big garden and much more space to live in which is a godsend as their first house was quite small. Again they have parks within easy walking distance so get out for their daily exercise. ED and SIL seem quite happy to have YD living with them at the moment (she escaped the London lockdown the day before only travelling for essentials was introduced!) especially as she’s a professional chef so they are being well fed! It is company for ED when SIL goes back to work this week s well as her being grandsons childminder for that time as ED is working from home.
We have also been having big family chats which is nice especially for Mum who is on her own but coping very well with well organised local support and other family members keeping in touch. We also are having a daily riddle on our WhatsApp group which is good to get us all involved and with the immediate family being quite far flung we are catching up more than we usually do!
I do however have some sad news as OHs Dad died in his sleep early on Monday morning. He was in a care home where he’d been since being discharged from hospital after his broken arm. He was well looked after and quite happy there, suffering from dementia he didn’t really question why he was there so had accepted it as where he lived. A difficult and sad time though as the family, especially OHs Mum wasn’t able to visit over the past 3 weeks due to a non visitors rule and of course the family can’t meet up to comfort her because of social distancing. Given she has acute angina and is breathless to the extent she can’t talk much at all means no one dares risking her health. Luckily one of OHs brothers lives with her so she does have company and all her shopping etc done but it’s not quite the same as when my Dad died and we could all visit my Mum to console her, and each other. The funeral will also be a completely different occasion that expected, that’s when it can take place given the constraints and pressures on the relevant services at the moment.
So I end on a sad note but he was 87 and had various health issues and to be honest OH had not expected him to even live this long so he had a good life and his dementia had not robbed him of all his memories so it had not got to that distressing stage for everyone where he had no idea who they were.
Take care all - a bit of a me, me, me post but thinking of you all with all your difficulties at this time.
how are you getting on with this strange way we find ourselves living in? I find it is quite easy to lose track of days and times. I realised today that I had not changed the hour on my watch and it hadn't made any difference. Strange for someone who watches the clock all day to have lessons starting and finishing on time to keep the school day ticking over. I thought of lots of things I would do if I was home but actually it takes longer at home as I have over 200 individuals and parents now rather than 7 classes. I am having to ramp up my ancient tech skills to accommodate setting work and most difficult, marking and giving feedback to everyone online. Haven't been too adventurous yet while I settle into it. I have replied to every single query on the same day it was sent to me and given out hundreds of lost passwords. I fit this around foraging for shopping and delivering it to my 2 oldies, neither of who have the foggiest idea what is going on outside their door. Both are highest risk so I probably take a chance every time I go in but when they live alone, they will starve if I don't. Its bizarre travelling along our busy roads as they are so empty. No fierce police stops here yet. I seem to go out more than everyone else in our street put together but it is just the essentials we are allowed to do. I don't exercise out at all, no time left. Then in the evening we do something together like bowling on the wii, online quizzes or houseparty chats to the rest o the family. This week we all have a bake off and have to create something with the limited resources we have, should be funny. Son has cabin fever as he has no work whereas Victor and I have as much if not more than usual. ED has been in isolation and escapes this week. I miss seeing the baby especially as they change and forget you so quickly. Still working out how to do the Easter egg run this year. Sad about our lost holiday which I would have been about to go on plus my birthday trip which won't happen now. Still I will be content if all my nearest and dearest all sail through this ok. I think we all feel the same.
Nicky I hope your counts are high enough to have your delayed dose this week. I have been devastated, for those it will affect, to hear that so much cancer testing and treatment is being postponed. Although of course I understand the need to throw everything into action against covid19 spread. We should be able to look after everyone and I feel sad that choices have to be made, especially for those most involved by this change just when they need it. I hope it will not have any impact on your timings of doses and results. Are you expecting to have more change, it sounded like you thought it likely. How are things going? I sense a bit of restlessness in your post and you are on my mind. Do we need a big chat about medical stuff, you know I will always do my best to keep in touch with your treatment and be here to bounce ideas off? Are you managing to keep your spirits up without seeing the rest of the family? I hope so. Carole I was thinking the same about you. Are you managing ok? How are things with you in France? That's when you miss home and family more. Hope the dogs are keeping you company and busy 🙂
Lisa glad to hear you are keeping well as you often get a bad cough in the winter. Good to keep isolated. Poor mum and dad, are they on the mend from all their illnesses now? I don't think I would go to mine if they had someone else in the house but they are totally isolated, so it was not a difficult decision. She wouldn't last 10 minutes without milk for a cup of tea. Being in Tenerife must have been scary. I don't think I will chance going abroad at all this year, even if we get to a clear point in time, just in case.
Well I better buzz off. The only good thing is that nobody is allowed to go to the D Lisa. Hooray.
Take care, keep safe and well my friends and talk on here when you can. Much love Lily xxx
Hi all, how's everyone doing.? Nicky sorry about change of treatment hope it goes ahead this week.
Well lots happened eh, I've been working on arrangements for virus as well as foemmaly merging tomorrow so busy to say least and a bit run down. I'm working from home and self isolating just cos had few chest issues with cough in past and overweight 🤔🤔 only out to check on parents from top of path when dropping of their essentials. Worried about them as I'm sure we all are with those older and vulnerable trying to keep them safe. I was in tenerife just as hotel issues emerged but long way away and parents too so they've isolated since back so on week 2. Missing them but dad's become expert at what's app shocker. Hope everyone is bearing up and keeping busy... No more dentist chats lily please 🙏🙏. Well off to either eat or clear junk room into office. I know which one will win 🤔😉
How is everyone doing? Very difficult for those of you who don’t need to self isolate for health issues but have to because of the (correct) government advice. I feel very sorry for our children’s generation who haven’t had to deal with anything like this before and all the children who can’t play with their friends. Difficult times but essential.
I didn’t get treatment last week due to a low blood count, I may have said, so back this week and hope to get chemo. Might be the last one for a while as the cases of coronavirus keep rising, or a change in treatment (unwanted but probably necessary to restrict trips to hospital) but we will see how our local hospital is coping.
Keep calm everyone and look after yourselves.
Hi all I'm here and will do full catch up tomorrow. Glad you're all bearing up we are here it's just been manic with work and planning for this 😢😔. Speak tomorrow xx
Hi ladies, how are you all? We haven't heard from you for a while Lisa, s hope everyone is ok as I know your parents have had some health issues not too long ago. I bet you are going to miss holidays like the rest of us this year. Its such a worry to whether you will even be able to get your money back. Our UK holiday has gone and the firm have not been good. No option of a refund and just a mad scramble to change dates. We now have a booking for next year! It seemed a safer bet than booking again for a few months away. Who can tell what the right things is, in these uncertain times.
Carole how are you getting on? Hopefully you do not have too long before someone in the family is home to keep you company. We have family in Spain and they are completely locked in a little flat now. They seem ok with it though.
Well how many of you have had the vulnerable person text and been told to stay in for 12 weeks? I could not believe it when I got one after all this time! Now I have all the family saying I should stay in and thinking I am more vulnerable than they thought. So now they think I am just pretending I am alright! Victor thought it was a trick and someone had sent us a fake text. Then he thought I had sent the fake text. The more I laughed the less he believed me, but it was nice to have a good laugh.
I am sure you're confined to barracks Nick and quite rightly so to keep you safe. I am glad to hear you are taking care of any contacts but so sad not to cuddle the littles. Our 2 youngest gc are in isolation which has made us al think a lot more as we all saw them (pretty certain its tonsillitis)but I did have a talk through the patio doors on mothers day when I took them shopping. Its so strange leaving shopping outside the door. I have to keep reminding myself as I booked hair and then realised how silly I was and cancelled so roots will be untouched. Victor wants me to try to cut his hair. Its tempting to be creative but then I better not as I can't escape for some time. We have quite a lot of key workers in the family but isolation puts an end to that. Baby is 7 months now and rolling around and shouting for what he wants, mainly food being a boy! We are trying to keep him safe as he has chest trouble already and these days they don't always treat chest infections until they get much worse. Annoying.
Is your hubby home Nicky? I thought you daughter would be. Lots we know are then going to work in supermarkets where there is such great demand at the moment for extra staff. I have booked several slots in case but trying to avoid being in queues as they are asking. Nicky I really feel for you having to go for bloods and then chemo. Do you have t queue up in the general blood section or are they keeping chemo folk separate. I always felt that I could sit next to someone with something dodgy exactly when I really didn't need it. I am sure they are taking a lot of extra precautions. Hope this one is kind to you and in and out as quick as possible x
There is nobody else to sort mum and she is ready to throw herself under the bus again with depression from the news and lack of visitors, so I have to see her no matter what. She is completely unable to last even half a day on her own so no choice. I stopped work this week but was really unhappy as I felt I needed to be away from there much sooner, no joy though until stricter regulations came in around health. Teaching so many people by email or online is bizarre, a bit like being a switchboard operator with so many things coming in and to respond to. Victor is desperately concerned about finances as he was hoping to retire but its not a good time to cash in anything. Son is chopping trees down to distract him as he can't resist going to manage any works in the garden. So many people's weddings cancelled its so sad and baby can't be christened. When Victor shouted tonight, hurry up Boris is going to start talking, I thought this must have been what it was like in the war, waiting for the PM to speak. We don't often do politics on here but I do think he is handling all the public speaking and information giving every night really well. I find him easy to listen to and what a job to have at this time in our country! I will say no more in case I offend anyone. Well Nicky thinking of you this week, keep me posted. Hugs all round, cyber ones are so much safer these days than the real thing love Lily xxx