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
What tough times - for all of us especially those with older relatives to think about and the more vulnerable. OH and I are pretty much self isolating and have been for over 3 weeks but I’ve realised I’ve put myself at risk for a while So now being even more stringent. Have been distancing ourselves from everyone including grandson and close family which is tough but have seen him and chatted to him in the car and of course on video messaging. Looks like we’re in it for the long haul and I can see measures coming in like Carole has already got in France. The very irresponsible people who feel it’s not important to avoid contact are making it necessary for the rest of us to have this thrust upon us and they’ll be included in all of the measures as well.
How is your extended family with lots of youngsters and babies coping Lily? Any issues with childcare? Our GS usually goes to a childminder but they have also had to close. Both my daughter and her husband are in the key workers category but there seem to be rules in place that a child minder can’t look after their sone which seems wrong. She’s in food industry, baby food and milk to be more precise and is the account manager for Tesco so needs to work to ensure stocks and any issues are dealt with, he is first line national grid to identify faults and fix minor ones in Central London. They will be able to do their jobs around his shift work but not if he has to be called in for cover if engineers get sick. YD has of course not got a job as the restaurant has had to close but hopefully the new measures will mean she will be OK financially and able to help by volunteering.
I am due into hospital next week for the next round of chemo which I’m not looking forward to but will be extra vigilant and hope all areas are as clean as the chemo ward always is.
how are you all getting on? I thought I might be at home after today when the schools close but apparently I am a public sector worker who can be directed to do any other things and the school can be remodelled for a different function, whatever that means. It feels a bit like being in a film during the war, especially with poor Carole having to carry paper to be allowed out. Is there a fine if you don't have the paper? I totally understand why we are all asked to do this but it doesn't sit well with what we are familiar with and our normal, or is that OLD lives? I am not really sure what I will do next week. In school it was goodbye to everyone, just like in July but it wasn't. Puzzled faces, tears, some happy. It was a bizarre day and quite sad.
Carole I thought you sounded a little down, probably feeling lonely so please talk on here more often if it helps to have contact with us. My father had fibromyalgia first and then a second condition. I can remember him groaning as he tried to twist to get out of the care and sitting and then standing again. Have you thought of an electric chair to lift you and save muscles? Are you allowed to walk the dogs when you like? I think you would notice quite a change if you caught it and hopefully by isolating there is a low chance of getting it. With Spain having so much covid19 its lucky you haven't caught it on your trip. How are food supplies with you. I find it has taken over talk about the weather here! Who thought anything could ever do that? The family all alert each other to toilet roll deliveries in local shops and nappies, which are even more worryingly sparse. I have no idea why this thing with toilet rolls has happened but read some garbled piece about it relating to fear of an illness and that we relate fear to making you want to go to the toilet and to be hygienic!! Really. What a joke. I keep thinking I must buy Easter eggs before they all disappear into mist or maybe I should buy them loo roll instead!!! I do hope you are all managing ok. Lisa up North. Carole in isolation and Nicky especially you as you have to have so much medical contact. Are you seeing your grandson and family or are you trying to isolate too. Hope jobs are ok. Love Lily xx
I'm isolating myself, can't really do much else really as we live in the countryside. I have neighbours but rarely see them.
We have to carry a piece of paper explaining the reasons to be outside of home, you have to tick a relevant box and if asked by the Gendarmes to provide it then you show them. It has got to be done because this virus seems uncontrollable. As I always have a cough I wouldn't be able to go by that so am taking my temperature twice a day.
To think that 20 days ago we were in Spain when there was only a couple of cases of CV, look at now, 2nd country with cases behind Italy.
No diagnosis for me except fibromyalgia. My Diabetic specialist thinks my hand problem could be capsulitis, apparently it is often seen in the neck and shoulder and hands. This has never been mentioned before so I have a prescription for physio, but of course physio is out of the question at the moment.
Have a good weekend all and Nicky I hope your new chemo regime is kind to you?
Love Carole xx
Nicky just wanted to say belated birthday wishes. Hope you managed to do something nice to celebrate xx
Hi everyone, how are you all? Hoping to hear nobody close to you affected. I have students being sent home and self isolating every day so I feel like I am just waiting for my turn. Its unlikely my oldies would cope but I also can't leave them without food or company, so its a double edged sword really. Nick I laughed about you finding that old post. I remember saying I felt I was going to have to bite the radiator! I loved the poo posts, really cheered me up when suffering. Are you getting the steroid suntanned red face? I always got that. Is there any chance you can gradually reduce the amount of steroids if the side effects are manageable? Do you remember they used to make me lose a lot of my eyesight for a few days. Horrible but you have to look at the big picture if it keeps you safe. How many days do you have to take them for? Everyone I know is regretting booking trips and I think I would only go last minute for the time being, if I even chanced that. We have an Easter holiday in the UK so I hope that should be ok. My birthday holiday trip is almost certainly gone. Just hoping they ban travel so I get the money back for it. We are also planning a family event as its my ruby anniversary this year (married at birth ha ha) but I am loath to actually put a deposit down anywhere. I feel for people getting married this year after all their planning and the worry about if they will be well enough. Son booked a stag do for his friend just before this broke.
Lisa had you planned trips already? I know you are usually well organised. Can I add to Nicky's concerns about any flooding in your area too. I know your company help locals in their time of need. I remember the bridge got swept away before! Carole yes hoping you avoided bugs too while in Spain, hopefully you weren't in any of the new risk areas. Any news from your tests yet? Hoping they can recommend or medicate something to alleviate symptoms and help you. Hugs buddies love Lily xxx
Yes, the coronavirus is a worry for all of us in active treatment ie chemotherapy. I am avoiding busy areas but luckily so are many people as our town is quite deserted when I choose to go in! As are the supermarkets, luckily I can choose when I need to shop. We live in a rural village but there’s a lot of commuters here so I think it won’t be long before we have it on our doorstep. OH and the 2 companies he is currently a consultant for are adopting working from home so that means he’s not in London as much as he was. They are both technology companies who’s businesses are to do with working remotely so if anything they might be the type of company that does well out of this in the end.
In terms of my chemo and SEs things aren’t too bad, in fact much better than I had anticipated but the coming off of the steroids does make you feel worse, I haven’t had them for years so had forgotten all the SEs that they bring. Funnily enough I was reading some very old posts, and I means very old, when I came across our lovely Lily and some comments about pooing (or lack of) ha ha. Very descriptive I might say but it sounded like you wanted to share 😂😂
Onto other things.
Lily, you poor thing with your tooth. A double ouch - one for the pain and trauma of it all and two for the bill at the end of it. Obviously something you had to have done as you couldn’t look like a scarecrow with a gap in the middle could you. Not nice at all. Look after it!
Carole, I hope you enjoyed your revised holiday - and haven’t brought anything unwelcome home with you! A lovely part of the country, I’ve not visited those towns but have been in the area before. When I say area I mean probably within a few hundred miles of them considering Spain is so big. A lovely break though and a nice celebration for Mr P. How is the current situation affecting his job on board? Probably not too much in his role and I wonder if ferry bookings are on the up? OH and I were considering a trip into France this year, before this virus all kicked off, but I expect everyone will have the same idea once we’re all aware of the spread of it elsewhere and where you can or cannot travel to. My dear Mum was on the ball a month or more ago as she’d booked a holiday to Greece but realised if anyone on her hotel got it she’d have to be isolated, not nice in a foreign country all on your own (even though it was a Saga holiday she wasn’t going with anyone she knew), so she cancelled it straight away. I expect everyone’s plans for holidays are on hold? We hadn’t done anything abroad since December and we’re waiting for my results etc and new treatment plan before deciding so of course it’s not happening now! We’ve had a couple of one night stays away which has been nice and will continue to do the same in the UK, or a longer holiday in the UK, until the peak passes but then everyone will be rushing to grab their holidays!
Lisa, how are you. Had you got any plans. I know you usually go to Florida early in the year with family but having just seen the announcement that Trump has done for most European travel being banned I think it won’t be long before we are on the list as well. Also you often have other trips in Europe so have/were any affected? Also hoping that the flooding hasn’t been a problem for you and your family, hopefully it isn’t quite so bad now but anyone dealing with the cleanup must be having a horrible time.
Well, that’s my catch up, no real news just chugging along and avoiding the bugs!
ps just edited this to say that it seems lots of ladies were having problems with the PM part of the forum, Lily, it wasn’t just you. They had changed the format (again) and maybe not tested it properly (again) so it wasn’t working in all cases. It’s gone back to its previous reincarnation whilst they fix it so you should be able to use the facility. Xx
Hi everyone. There have been scares near us and one positive but not broken out round here quite yet, probably just time. How about everyone else? At work its rumours constantly about whether they will shut schools. Its tricky as important exams in May for some year groups but most other students would manage at home with emailed work. Maybe they will ask us to predict grades for those who are not allowed in? That used to happen in the past. Difficult to guess where this will go. I agree Italy would have been very difficult and you might have got stuck there or picked it up yourself, which you really don't need on tp of everything else. How are your other symptoms? Any more news from your tests? Spain sounds a lovely alternative. I am the same age as Mr P then. Thanks I am putting the dentist out of my head for now. Got a hospital appointment soon and a bit worried about going in there.
Lisa how are the family and friends in your area? Nicky hope you are keeping clear of nasty germs too and managing ok. Managed the pop up, then couldn't get back to my post, here at last 🙂 Take care all love Lily xx
Hi ladies, I hope you are all avoiding the c virus?
We had to cancel our planned trip to Italy, it just wasn't worth taking the risk. So many tourist sites have closed that we had planned to visit.
So we are now in Spain and have been to Roses, Tarragona and Zaragoza. Tomorrow we make our way back to France. It's been a good trip, with loads of walking around the cities. Lots of exercise. Mr P had a nice 60th birthday.
Lily what an awful time with your tooth problem. I know we all fear our dentists, so just to say hang on in there buddy 🤔🤞🤞🤞.
Otherwise love to all xxx
Hi everyone love to hear all your latest news, hopefully good but share anyway in case we can help or at least be a sympathetic ear to share troubles. I haven't really been myself so I am sorry for not being here more but I have had a bad time with my teeth. One shocking moment when a tooth near the front sheered off somewhere high in the gum. That horrible sickening feeling :catsad: . I couldn't go to work like that and threw myself on the pity of the dentist. Well actually I camped in the car park from when they opened and it quickly became apparent that they could not fix it, at which point my dentist came to save me. He is a dental surgeon and convinced me he can sort it out. Next evening I had a late appointment and mini surgery to find and remove the rest which had a big abscess, hence end of tooth and probably chemo damage in there too. He got an amazing false tooth made in 6 hours, which has given me a bit of a lisp but I can at least go to work and out. Went in to work, was ridiculed by my 'boss', nearly resigned on the spot, swore a lot, everyone else amazing, I've adjusted to my lisp and glare at anyone who dares stare at me and pretty much ok now. So its £2500 for an implant plus the worst bit, having it done. Sorry to be such a baby but I am literally scared stiff. Delayed while my bones heal and infection dies off. Also got a strange lump growing on my eye so hospital for that in few weeks, not urgent but crikey didn't need another flipping thing!!!!
Sorry I'm moaning Nick when you have much more important things going on. I think it was a good plan to pay to go because nothing more important than your health. What chemo are you on and how long in the ward each time? Hopefully not one of the short or double cycles. Most of all how are you getting on with it. Will you lose your hair again? So annoying and cold at this time of year. I hope its a nice one but mostly I hope its THE one that knocks the bloody c for 6 and brings you peace and stability or better. It was reassuring that all parties agreed on your treatment so you weren't left with another difficult decision which way to go. I used to get the steroid sun tan waking with a red face, does it affect you that way. We used to wean off them over the months but I think it depends on the particular chemo as to whether this is a good thing to try. Maybe drop one day of them if side effects not too tough. I better not read that book as it sounds like I would have job to forget what it predicts and worry. My oldies are in a similar state so I am trying to be careful but its probably out of my control in reality. I can see whole nursing homes losing all their residents if it gets into them. Hmmm interesting about the PR status, you must ask what this indicates. Is it a 2nd from the original then? The tests sound onerous. I doubly feel bad for my d word phobia. Take care out and about. Hugs Lily xx
Hi all, and especially Dr Lily with my update.
Yes I did get to see the Dr at The Marsden quite quickly although had to go private as he/they are not taking on second opinions at the moment from nhs patients unless they are likely to fir one of their trials. Understanding but frustrating however OH said why not pay (as I had done so before) so I saw him on Friday. All agreed on chemo route and subsequent possibilities of treatments which is the other main reason I wanted to discuss with him face to face rather than email via my own oncologist. Another onc in Oxford who my own onc had also contacted (as they are also a trial/research centre) had also recommended the same chemo so I know I’m doing the right thing. Just fingers crossed it now works! I started that on Monday so I’m in the steroid states which I hate and in fact coming off them is also bad so not looking forward to the next couple of days but at least my next IV isn’t until 3 weeks so I hope to get a few better days in before then.
Other than that I had a full on hospital week last week, Ct, MRI, blood test, onc appointment, private onc appointment - I hardly had time to be at home. Obviously being very careful about hand hygiene etc and now will be limiting my time there until blood test and treatment day and using the quieter hospital entrance where not so many people are around. All the wards, especially the chemo ward, are always hot on hygiene but it’s the other people around you you have to be worried about. Being at a school must be very worrying Lily, as, I hate to say it, children might not be so good at washing hands even though they are technically young adults not primary age. We’re also worried about the oldies especially OHs Mum who had terrible breathing problems as it is. He has stopped commuting to London for now except for meetings that he needs to attend just to minimise the risk and is working from home.
Having got, and read, Bill Bryson’s book The Body, for Christmas I’m really not surprised this has happened. I’d just finished it and at the end chapters it talks about viruses and how they spread, when I heard about the first corona virus cases in China before they locked everything down so it was quite obvious it was the perfect storm waiting to happen, and it has, yikes.
Onto other matters, firstly Carole, which is related to the above, did you visit Italy for your OHs birthday? I do hope you got to go and have not been affected (rather than infected 😷) by their outbreak? If you did go let us know how it was, hopefully you both had a fab time. We have no plans at the moment to travel abroad for the coronavirus reason and also until my chemo was decided upon (as I didn’t know which regime I’d be on). However we’ve had a couple of nights away in the UK which have been good and will plan a few more unless we have to all go into lockdown. After that we will see.
Lisa how are you doing? Have the floods been very bad where you are? It’s constant rain everywhere isn’t it. We have had a few road closure and friends are struggling in a place they moved to a couple of years ago with water draining off an adjacent farmers field through their property in the country, everything is so sodden there’s nowhere for it to go and previous owners had a ditch dug for this very reason to catch it so it sounds like they need to do it , or find the old one and re dig it!
Bye for now, sorry for lack of contact but I had to get my head sorted out with all the appointments and tests before I knew what to report back. And btw Lily, liver biopsy showed same receptor status, although PR was zero not 6/8, on that particular lesion but it indicates the same profile as original/primary.
Hi buddies, how are you? We haven't spoken since this corona virus became the main thing everyone talks about. How are you all feeling about it? I feel like when you work in a school, you are a prime target and its only time until someone passes it to me. However, I am very worried about my 2 oldies who have very impaired lung function already and don't want to have that guilt on my shoulders if they get it. I was worried about the baby but children, thankfully seem to be doing well, although our asthmatics are a bit more of a worry. After hearing they might shut schools and people go in quarantine I bought 2 big bags of toilet rolls, antibac spray and 3 bags of pasta. Not much of a plan but ha ha toilet rolls were a must !!
Nicky have you any news about the liver biopsy results? Are the … the same still? Also I wondered if you had got your Marsden appointment yet. I think they were quite quick one time and very slow a later visit so hoping people are getting on to help you make decisions. I would like to keep up to date with your latest news and thoughts on it. Being on chemo while the virus is around and visiting hospital is an extra concern for you, sadly. Hope its not on your mind too much. Lisa and Carole same with you and your oldies. Better go as still marking. Hugs Lily xx
Just a quickie. Lisa we used Staysure. They cover pre-existing conditions.
Nicky, I'm so sorry that you had to have another liver biopsy, I'm sure they're not nice. But, on a positive perhaps the results might open up new treatments? Hope so and my heart goes out to you with cyber hugs.
Love to you all xx
Still can't see where to send a pm? None of the boxes I am clicking offer this function??? Must be me!!
Try Saga. My Dad had AF and him and Mum used them all the time even if they weren't on one of the saga holidays. Age does come into it as well so the premiums can go up but I'm not sure your Dad will have reached that threshold yet. Us secondary ladies have a rough deal with travel insurance so there's a few companies listed on a thread in the secondaries section who give reasonable prices, or try one of the ones that the BCC website advises for BC patients - they are ones used to covering pre existing conditions whatever it might be.
Hi all, I was just going to confirm how you send a private message, shocker I know as struggle to figure out how to log in some days. Nicky glad you're having a little break for a week ans fingers crossed for some other chemo options xxx
Quick question anyone any tips on best insurance companies? Dad found out by chance got irregular heartbeat and enlarged heart ever so slightly, the insurance quote went up to 800 from 300, which seems a lot and mams having referrals to so its strange trying to sort so any suggestions on companies greatly received xx
Hi Dr Lily! As ever you have spent a lot of time adding suggestions and links to help. Unfortunately a lot of newer treatments are not available to us ladies who are further down the chemo/treatments path. They tend to be funded (by the NHS) if you fir the NICE criteria which usually means a first line of treatment. You can sometimes get the treatment as part of a trial but, again, you need to for the trial conditions to be accepted. Therefore being so far down the line on treatments means you are not eligible. The main research hospitals, like the Marsden, treat either trial patients (who have been accepted) or their own patients who live in the area of the trust. As I'm not even in Surrey, let alone near the Marsden I don't qualify to be treated there other than a private patient and I'm not sure any of the regimes would be suitable anyway even if I had to pay for them all. Our local hospital has always given me the treatment I need so I have not problem with them, it's just there's no so many available.
Anyway I have had another liver biopsy to see if there's any change in receptor status (there was when I had a biopsy of the lesion removed in my resection). If there has been this could open up other possibilities but I'm doubting they will have done. I'm then paying for a private consultation with one of the Drs at The Marsden to clarify what chemo I should have and we'll go from there. Currently having a break of a week or so to allow the previous chemo to flush through my body before starting the new one. So thats the fuller update,I really didnt have time when I posted before.
ps if you want to read back over the thread you can still click the 'view discussion in a popup' link which is below this box (that's if you meant that) and to send a PM you need to click on the envelope icon which is the the left of the little face at the top of the screen (which is your account icon) and you should be able to compose a new message.
you have a lot going on with you and around you at the moment so I hope you can make yourself be selfish and put yourself first and find time and energy to sort out number one. I read back this time before posting (really miss the ability to track back in posts while online, whoever removed that option grr). What did the latest CT show? The fact that you mentioned a change being imminent makes me think maybe not all of the … are doing what we all hope. But you often have different paths of movement from originals and news so it needs a big brain and a lot of similar secondary experience to make a change in treatments. So I agree a local hospital is unlikely to have that type of knowledge and experience, unless you are very lucky with staffing. Were you think of seeing someone at the Marsden or a hospital change where they permanently have someone of similar rank? Moving to a bigger hospital who routinely had that level would seem a good option to me so you got that every time, rather than trips to the Marsden and waiting for referrals each time. Where would you be able to go? Our hospitals are in a chain of 3 going northwards. A friend of mine optimistically went to a local hospital north of us for convenience. I could never understand why as ours is a centre of excellence and the plastic onco is rated in the top few for all Europe. Sadly her tiny lumpectomy needed several more ops to even be acceptable and she has now transferred our way following a recurrence and a need for a big op. Its such a difficult decision to make as you try to find the best thing to do.
What are your thoughts on next steps? www.drugs.com/cancer-breast-treatment is a site I came across that has a useful section putting all the drugs into categories and might be worth looking at within your research to see if there are any types of drugs/inhibitors that they have not given you yet. You have to scroll down a bit but there is quite a lot of info on which drugs are in the same categories and I know your level of expertise in looking at it. I also read up a bit about trials like Bolero2 showing the advantages of combining drugs, which I think we went through years back. That proved adding everolimus to exemestane as a joint treatment, doubled its effectiveness, for anyone meeting the right criteria. Anyway I am here if you want to bounce any ideas. BTW has anyone worked out how to send private messages of have we lost that now?
Hugs to all Lily xx
B elated happy birthdays to you, sorry I’ve not been on for a while. Life in the real world is complicated at the moment. Another change in treatment is due which is expected but unwelcome as I said last year! Lots to decide, lots of extra tests, appointments etc to make sure the right decision is made. Plus of course other totally unrelated-to-cancer family issues to sort. Nothing bad on that score just time consuming and trying to help OH with his having to sort out all sorts of issues with his parents who are not in good health at all. Looks like no holidays for me for the time being but Carole enjoy your Italian trip, very jealous.
Hi ladies, we need spring and the sun to cheer us I think. Today was so cold and I was outside doing break cover so freeeezing by the time I came back in to the quad. I see warmer weather is on its way, can't be soon enough for me.
Carole my dad had that too and he found it difficult to bend and do things. He had a rotater thing on the car seat to swivel round like a cake stand lol. It sounds funny but saved a lot of aches trying to turn. I think things like fish oils etc if you can stand them are supposed to help joints. Might be worth looking up some info about diet helping joints. I am sorry to hear you have this to put up with. But the trip to Italy sounds amazing and I am very jealous too.
Nicky how are things with you? Hoping that things are chugging along the same. I can't think if you have told me latest results but have in my mind that some were due. Fingers crossed all going ok xx
Lisa every time I think I am cold, I think you must be even colder up there brrrr. Sorry to hear about your parents' conditions must be a worry. As you say, its tricky being on the worry side too. Yes you know how I feel about the d word. I am 60 now and I can't ever complain abut getting older because as we know some dear friends did not get the chance to. Always something worse if you look around. Everybody fussed me terribly and I have just had a second surprise party. Victor went to town and managed to surprise me for the first time ever. I have some lovely gifts and as requested lots of trips out over the year with the family individually. Feb birthdays are not best for going places.
Better finish here or will never get it posted before dinner. Much love Lily xx
Hi all, I haven't fell of the end of the earth, although almost got blown off last night. Hope everyone is bearing up with this damn weather.
Carole poor you, my friend has that and it helps with answer to your pain but hopefully they csn tailor some treatment. You looked fab on your birthday meal out. Oh and Italy, not jeleous at all... Maybe we should rename this thread darling buddies who travel lol x
Nicky, glad you're brothers are helping out but like you say always falls to the nearest, it's same here but they need to consider you more. Hope there more plans sorted for treatment and your having a little break xx
Lily, just gotta lo r a new baby smell yum. Now thanks but I'm sitting at work with my legs crossed and a pain in my lower belly with all the implant talk. Even I've been considering braces. Bloke at work just had implant and looks great, my aunt had one too and she's worse than us for dentist fear. So spill the beans on the big birthday????
Not much here work is mega busy we are formally ceasing to exist which is sad but part of a much larger Co. So I'm involved in lots of the work by nature of my job. Had a few trips away too and tenerife in few weeks with friends. Been a bit quiet as been some health issues dad's got enlarged heart and irregular heart beat and mam been to check her ovaries for cancer which was clear and womb cancer tomorrow, god now I know what I put them through waiting for results.
Well back to work, catch you all soon xxx
How are you all doing? I hope that storm Ciara didn't cause any damage to your houses or gardens? We were lucky, just a bit of wind and rain which hasn't stopped for days.
I was in hospital last week for 3 days. I still can't say I have an auto immune disease as the hospital blood tests say I don't, but my local lab has said 3 times that I do with a high positive. So the hospital is double checking my blood again. I was diagnosed with fibromyalgia. The pain specialist said that it could be as a result of cancer, chemo, tamoxifen, radiotherapy even after all these years. So I am on anti depressants and gabapentin. My hands are still as bad so I think I'm going to have to learn to live with them like this.
Lily yes, our youngest granddaughter is walking now. She looked really cute on her birthday last month.
In a couple of weeks we're off to Italy for a few days. Lucca, Florence, San Marino and Rome are our destinations. It's to celebrate a big birthday for Mr P.
Well that's my news for now, hope you're all ok? Love Carole
Hello, Carole sorry I didn't have time to reply properly yesterday as I could tell things are getting to you. I can't imagine how constant broken ribs must be and hurt. Poor you. I hope the bone strengthener will help protect you a bit more. Haven't you had dexas? They give them here after most breaks and then if you have any of the density issues like I had osteopenia, you go back every 3 years I think. Mine went back into normal range as soon as I stopped the hormone tablets so no call backs any more. I hope the 2 medications can make you feel more cheery too although I read that they can make you feel a bit worse before you feel better, so try to keep that chin up and focus on the nice things around you and family perhaps, Maybe skype more often. Belated happy birthday to you. Did you have some nice gifts and calls? I forgot we are all close in dates. Is your granddaughter walking yet or cruising round the furniture. Our new baby is a very happy solid chap and no sign of doing much apart from wanting milk and shouting loudly so far. Yes I will get the dental issues sorted I think but it does also depend on what bone density my jaw has but hopefully not an issue. You have to be scanned to check they don't drill through something they shouldn't yuk!! It cannot be for quite some time to give a better chance of being successful following the abscess. Anyway take care and we are always here xx
Lily, you have a big one coming up ???? Well your plan of lots of little breaks and seeing all your family sounds a wonderful idea. £3000 for an implant? My goodness that's steep but, if it were me and it's a front tooth I think I would try everything to have a tooth, will they take payments over 6 months or 9 months? It sounds like your Mum is behaving well at the moment.
Nicky how are you getting on? I hope your CT scan results showed improvement or at least nothing new. The place that you're looking at for your Mum sounds just the ticket as she is still quite independent.
Lisa have you managed a trip away recently?
I still have no confirmation of my tests, and yes Lily the next visit is to do the same thing. They mentioned giving me a dexa scan as I've had so many broken ribs, and in fact have another episode now, x ray today to confirm or not but on examination my GP thinks they are broken. They will do a CT scan because of this persistent dry cough. So at the moment they are planning to give me a bone strengthener called Aclasta, and if they strongly believe I have Sjogrens Gougerot they mentioned a drug called Plaquenil, which is in fact an anti malarial.
I broke down in tears yesterday with my doctor, she's prescribed morphine patches for pain and Cymbalta which is an anti depressant, and also is known to help pain. I had weird thoughts through the night and don't believe I slept at all. Hope this gets better as I get used to them.
It was my birthday last Saturday so we went out for a lovely meal, and last Friday our youngest granddaughter was 1. Time flies.
Take care love Carole xx
Hi buddies, how has your weekends been? Lisa I wondered what was going on with your job now. There seem to have been quite a lot of changes in recent years. Do you still enjoy this new role? Carole any more news about your dx yet? I hope they can give you some help and support with some of the more restricting effects you have. Best pick up would be to visit all the grands I am sure.
Nicky well Carole and I especially know how you feel with mums. We love them all to bits but they can …….
I think my biggest worry might be that here is some sort of genetic thing that will make me do the same and be unable to stop myself argggh. Mine is being lovely at the moment as I have had some really bad trouble with my teeth and unless I want to stay in forever and resign its looking like £3000 for an implant. Not sure which I am most concerned about - having it done or not having it done. I saw that a petition is collecting names for cancer patients to have dental help as the chemo destroys teeth and I think it is right. The big concern is if I have enough bone density and I don't even want to think what they will do. Already had a bad visit and its still uncomfortable 2 weeks later and being scared of the blinking place doesn't exactly help matters. On a brighter note I have a big birthday approaching fast and I am trying to work out where to go. It will be later in the year and just a short city break to Europe but sneaking it in as well as a summer break I hope. Mainly I want to spend time with my close family and I have suggested that I could do smaller things throughout the year rather than something big in the worst time of year for weather.
Nicky it sounds like you have a lot going on at a time when you really want to research and think about what you do next. I understand the frustration as I get pulled in so many directions and my job isn't exactly any different! Very stressful at the moment. I would say being honest with your brothers was the best course of action, as we all know they don't read between lines or ask enough to know what is going on. I have to be completely clear about what I need mine to do. Oh and then repeat it quite a lot of times. It is a bit scary to move and leave memories of partners for oldies, so maybe a room plan of the new place and someone(else) talking about where she would put the furniture and special things she wants to take, would reassure her a bit. I think the problem will get harder over time too. I wish you luck with getting it all in progress. Mine still lives alone but we have 4 visits a day by carers plus everyone can drop in as we all live close to each other. the girls are fantastic at taking their share and taking the littles to see her most weeks, which she loves. Other thing is to find out if the new home has a programme of visits to places so she gets something new to enjoy and look forward to. Going back to you, I am not surprised you want some time to yourself. Waiting for chemo results and trying to second guess what they might be will keep your brain going over it. Would you be happy to stay on this chemo if it shows stability or even better results this time? I am out of date to know what the latest drugs for secondaries are. Are there any new ones on trial that you have seen which would meet your dx and would be a good plan to move to? I think you are right that you are definitely better under a team that have wider experience, probably more money. The other thing is that only certain hospitals run trials so you might get better access to new trials and regimes coming in. I don't know if its even possible physically and financially but have you ever looked into seeing a consultant abroad? America would be vastly expensive to visit and be treated even though they are way ahead of us by years but a friends' friend has recently been dx with bc and paid to have her cells tested in the states before she had chemo to see if they responded. So I guess there are some avenues if you pay. I am not sure whether these tests would be of use apart from initial dx but it might be something to find out about. It did not need her to travel. Would you ask for a second opinion to got to the Marsden again? That might be another route to think about. How long is it since you visited one of the top profs? I really hope that you have not got a decision to make on this treatment and that you can keep on this one or even better have a bit of a break to do some nice things. Always here if you want someone to talk to about it. Hugs all round Lily xxx
Hi Lisa, and all.
My brothers aren’t that bad, honest, they really do help but it’s the same thing with most family, the one living the closest does all the emergencies! I know one of my sister in law (on OHs side) has to do most of the visiting etc for his parents as she lives the closest and only works very part time so has the time to do it. Both my brothers live at least and hour and a half away plus work full time. My annoyance has been about my particular health issue not being taken into consideration, maybe I needed to be more honest with them - which I now have been ha ha.
Hi all, need to havr a good catch up tonight but wow nicky your brothers need a good kick up the 😉😉... Carol I hope you've had some news and lily poor baby with allergies 😕.
Whose ready for some sun, I know I am ☀️😊
I also haven’t read back other than Lily’s post from yesterday so apologies if I’ve missed some news. I have read them all but probably in the last week or so when I didn’t have time to log in and reply.
A very belated Hapoy New Year though as I don’t think I’ve posted since just before NYE. No real reason for this other than getting on in the real world and clearing up and getting back into routine after the festive period.
We were lucky to see YD for nearly 3 weeks as the restaurant had decided to shut, it’s not the sort of place that does Christmas dinners, far to trendy in Hackney for that! And as a lot of the youngsters who live up there do so in shared houses a big majority go back to their parents at Christmas so it can be a lot quieter both in the restaurant and in the house she shares. It was lovely to have her here for so long just to chill out as when she normally visits it’s for a much shorter time and tends to be a bit frantic around a birthday or something. Anyway it did her good to recharge her batteries.
It was also nice to get the house back to normal after the decorations had come down and all the presents eventually moved from where they had been left, plus a bit of ‘me’ time which I need these days with no decisions to be made other than what I need to do.
I had an extra week off chemo (a present I gave to myself ha ha - I did of course ask my onc 1st) again to recharge my batteries. OH and I on a last minute whim (and because prices are very cheap in January) decided to book a night away last Friday. We went over to Goodwood where there is lovely countryside as well as being close to the coast. We had a fabulous lunch at a popular quayside pub overlooking the sea and the sun was shining brightly (remember what that is?), it was a real surprise. The hotel was lovely as well, we had stayed in it before, with a nice evening meal and breakfast the next morning. All the good it had done us was then shattered by lots of messages going backwards and forwards between me and my 2 brothers about how low my Mum was feeling, and an extra message for good measure from Mum herself. She has had a bad cold over the past moth or so, one she is sure only she has had -ever- and that no one else has possibly had. To cut a very long story short we (Oh and I) ended up picking her up on our way home for her to stay with us for 2 nights. To say I was annoyed is an understatement and in explanation (which I’m sure you don’t need) is down to my condition and the fact the weekend was the last one before I go back onto chemo. OH and I just wanted to do our own thing, relax when we got home, no particular cooking requirements, see little GS on the Sunday etc but all those plans got changed. I did let my brothers know that I am currently the one needing care and am not a carer (which had already been explained when I started back on chemo early last year). If I was fit and healthy or even just not on chemo I could cope but I do not need the extra work involved looking after someone else. Grrrrr. Rant over. I know you ladies have issues with your own Mums that are even more involved and difficult but I really did not need this. So the ongoing situation is that Mum is still feeling low mainly due to the reality of Dad dying the previous winter and having a rotten cold which leaves her lonely and isolated living on her own. She has already addressed moving to a retirement village (does not need a care home or similar hopefully for some time to come) but this is now more urgent. Luckily we have already looked around a wonderful one in her own small town which is perfect for her needs but now the practice needs to be put into action. Over to my brothers for this one I think! Having said that I am involved, after all I have already done the preliminary viewings with Mum back in November, it’s just he sale of her place that needs someone other than me to be involved in.
So this, plus just catching up with things is what has kept me away from adding on here, as you can see it’s a long post!
Back to reality with chemo re starting yesterday and CT tomorrow - hooray, happy new year to me! Results not for a couple of weeks which I’m quite happy to wait for and then I hope to get a second opinion again to see what happens next whether the results are good or bad. I really feel at the moment our local hospital/oncology unit doesn’t have the level of expertise needed or oncologists specialised enough with patients like myself.
Well I’ve rambled on for ages, it will give you all enough time to have a cup of tea and cake whilst you read it ha ha.
Have a good rest of the week, hope the sun shines where you are at some point, and the continuous rain and winds stop.
Hello everyone, how are you all? Sorry its a really quick hello again but wanted to know if you had heard any more yet Carole? I never know whether it feels better to have a dx of a condition and then perhaps find out there are parts of it you haven't got or more worry not to know what is wrong. What is the reason for the feb checks, is that connected to the Gougerot condition or another thing you have, poor thing. What a collection of annoying things you have been sent one after another. I hope you manage to keep your chin up through this all, especially when you are on your own again. How are you feeling now? Good news about your daughter's job and the driving pass too. Well done to her.
Lisa hope all is well with you. Nicky how are you fairing on this regime now? I hope its one that you feel can fit into your regular life and everything else you want to do, without invading too much of your time. Certainly the time in hospital has dramatically reduced on so many regimes these days. I know you always have a plan, so how do you think it is going at the moment? I am so sorry I can't look back and check whether you will have had results. I must remember to read back a few before I start posting. Its really busy here. The new baby is so gorgeous but he is definitely going to be another one with allergies, already had a big chest/breathing problem and needed hospital treatment or a few hours and of course picks up any bug in a second. When well he is the cheeriest little baby you could hope to see and very cute. He is very sick but I think a lot is because he is such a little piggy, having bottles beyond the size he should as just wails if hungry. He has fitted in well with his sister, who has forgiven him for not being a girl and adores him. Very sweet together. Their Mummy is getting close to back to work time and wondering what to do but limited choices really. I had them all here while there was some smelly painting being done and it was lovely but a shock to have a baby here at night!!
My friend who originally had bc just before me has now had a big recurrence and is undergoing a reconstruction soon. It always makes you think, especially with 3 years between mammos now. They said she just needed a lumpectomy and rads when I had 7 months chemo too. I think they keep changing their mind about how much treatment people need. Better finish. Hugs to all love Lily xxxx
Hi to all
How are you all? Hoping you all enjoyed Christmas and New Year with your families and friends. It seems a long time ago already!
I'm still waiting for results of all the tests I had in the hospital. Last week I had a capillaroscopy which wasn't at all painful or unkind, basically just looking at my hands under a very fine microscope. He couldn't find any signs of vasculitis or vascular disease, so this is good news but still leaves me wondering why I can't use my hands and fingers without pain. The auto immune disease they are looking for is called Sjogren Gougerot, and another name for it is the "dry" disease. The lip biopsy should confirm this, but I've joined a forum for this actual disease and found that people have all the symptoms but still don't have confirmation. I'm back into the hospital for another 3 days 3 February for more tests including a CT on my chest. One thing I did learn from the last tests that as well as broken ribs I also have a broken bone in my spine, thoracic area. I have no idea how this happened.
The good news is that YD, who is now 25 has been accepted by the Civil Service in France (can't think what it is actually called) as an official interpreter. She also applied for official translator but they're saying she hasn't got enough of a diploma! Typical really as French bureaucracy goes. With Brexit about to happen as a translator she would be able to give an official stamp to things like birth certificates, marriage certificates etc. Apparently 5 people applied for translator/interpreter and only 1 got the accreditation for both. She is hoping to appeal this decision, but in the meantime can go ahead with being an interpreter.
Our ED finally passed her driving test, it's only taken 25 years to do it! Son's family have all gone down with a sickness bug so I'm hoping it won't affect any of you.
Our doggies turned 2 on NY day and are still bouncing about the place causing havoc. Mr P has been home since early December I'm sure going to miss him when he returns to work on my birthday.
Enough from me, how are you all? xxx
Hello and Happy New Year. We find ourselves here together still at the start of another year. So many dear friends who started this journey or joined us, shining away and not forgotten.
I hope this will be a good year for everyone and allow us to have some great trips away, fun days out, happy family days and each other to talk to whenever we need an understanding ear.
Happy New Year and lots of love buddies. Love Lily xxxx