68039members
358199posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Darling buddies from May - moving on

7,933 REPLIES 7,933
Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi Carole

Ouch, ouch, ouch, poor you 🤕. And so difficult to do anything about the broken ribs, only painkillers . Look after yourself - and keep your eyes open! As to your Mum there’s been lots of reports, and anecdotal experience from the public, about how people have got worse in lockdown so I do think it has had a detrimental effect. I do hope the anti anxiety drugs help your Mum and she stops fretting so much which, in turn, will help you and the rest of the family.

Cornwall is lovely, I’d never really been there other than a few days holiday when the girls were young but that wasn’t so far down and on the opposite, busier coast. The scenery was very nice so even the drive there was easy and interesting. Lots of coves, small ports, quaint villages - no wonder it had been heaving with holidaymakers a few weeks before when the schools were still off. As it was some places were busy anyway, far more people than we even see in our own village so the residents must be fed up! But you could find quieter places and we did get to see some landmarks and gardens that we wanted to.

The weather has also changed here after last weeks glorious last spell. It changed on Tuesday, just giving me enough time to dry all the holiday washing! Now it’s wet and very cold (at night especially with about 5C here). I will be packing away my summer stuff as well, shame I’ve not been able to use half of it as we’ve not been abroad all year 🙁

Nicky x

Highlighted
Member

Re: Darling buddies from May - moving on

HI all, Nicky it sounds like your break to Cornwall was very nice and glad you managed to get away. I don't know Cornwall very well but have been to Bude. It is one of the places I would love to retire to.

Lily how is your new working regime going, are you doing ok?   Our teachers here have to wear a mask all the time. 

Since I last wrote YD is a supply teacher for 7 hours a week at one school, and a supply teacher for a few hours at another.  One of the schools is more like a training college, mostly teaching young male, 18 years old who are doing apprenticeships. Being only 25 herself she is not a lot older than her students.   It's going well for her.

I managed to break more ribs by walking into a door frame, it happened so quickly I can't even begin to describe how it happened. Consequently I have been in a lot of pain since and I think this lot is probably the worst I've ever done.   The majority of pain is behind the left breast, I've even worried about having a heart attack. But it does ease slightly with the use of painkillers.

Our weather turned overnight, with Saturday being very warm and sunny and Sunday wet, much cooler and very Autumnal. Yesterday I put away summer clothes and brought out the winter clothes. Always a depressing time of year although hopefully colder, frostier weather that has bright and sunny days will soon be here.

No change with my Mum, the UTI cleared but they decided to get her checked by the mental health team as obviously her dementia has progressed.  I do wonder if the change in her routine for the last 6 months due to Covid has created the increase in her dementia. She wasn't allowed visitors until a couple of weeks ago, no daily newspapers, rubbish programmes on the tv that she didn't enjoy etc. The mental health team didn't think her dementia was too much worse, but as she keeps waiting to go home, waiting for someone to take her, they were going to give her some sort of anti anxiety drug.   We've coped with the repetition for years but the new things are something new. She will be 94 next month.

Lisa, how has work become so busy for you? Are you working from home?

Anyway, everyone take great care, Carole xxx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi All

Sorry for the absence but the main reason was that we went away for a week, yes, a whole week!  We went down to Cornwall last week, got back on Monday, so managed to grab the lovely weather we've just had, unlike this week when its gone all autumn on us!  We had a fab time, OH got away from the computer and didn't take a single work related call or email which was good for him.  Like many others working from home he tends not to switch off so easily and will often reply to things that I think he should leave, especially at weekends and in the evening.  We walked a fair amount, a bit to much for my liking as it always seemed to be when I wasn't wearing suitable shoes or clothes! And saw lots of wonderful places having been wise to the fact you need to book ahead of time to get the time slot you want (something we learnt after our trip to Kent earlier in the year). A bit of luxury with the hotels as well (we stayed in 2 places to see different things) as we'd not spent anything on holidays all year. So a recharge of the batteries - all ready for the onslaught of appointments!

As it was I had the results from my latest scan which showed a good picture overall with the only slight downside being that I have some fluid buildup in my abdomen.  I do know this can happen, after all our lovely Lorraine also had this, but need to find out more about when it happened ie was it before the new treatment kicked in or not.  So a few messages to my BCN during the week and I have an appointment next week to check it out.  It does cause some discomfort and was worse when we were away probably down to changing our eating habits so I do want to get it sorted.  The overall results were good though with a continued, and considerable drop, in tumour markers and liver mets reduced.  A relief as I was convinced it wasnt working as well as it seems and in fact wasn't surprised by the mixed results about the fluid. Anyway all of this is in hand - which goes to show that not all areas of the country are having problems or delays with their cancer services, our Trust has been brilliant with no delays at all and all treatments going ahead on time.

So, what with blood tests, dentist and dental hygienist appointments all booked in for this week it's been a busy time since we got back.  Catching up since the lockdown with the dental stuff, but checkups only, plus a hair cut which was planned a while back.

 I do understand the frustrations about not being able to meet all the family at once, Lily.  We just get to 6 of us if YD is here as well when we meet up as our little family group.  However not able, now, to meet any others at the same time. Our GS had a small birthday party this year, can you believe he's 3 now, but did have another one at his childminder with this friends there as they are their own little 'bubble'.  Luckily he's too young to want a bigger party and was quite happy,  especially as he got to open lots of presents!  It was just before the 'rule of 6' came into play so we managed to have both sets of grandparents there which was nice for him.

Well, that's my catch up, hope you are all keeping well - and safe.  My brother is in the lockdown area of Bolton so has been under strict restrictions for some time now, so far we aren't having those but who knows?

Nicky xx

Highlighted
Member

Re: Darling buddies from May - moving on

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

Lily xx

Highlighted
Community Manager

Re: Darling buddies from May - moving on

Hi @lisaf, if you wish to change your notification settings, you can go to this link🙂

We recently made an update to the default notifications the Forum sends out after hearing from some people that they found the default settings overwhelming. You can read more about this in my colleague's post here

Best wishes

Bernard

Highlighted
Member

Re: Darling buddies from May - moving on

Hi all, huge apologies for my absence work has been bonkers plus I've stopped getting notifications when people post so assumed you were all busy lol. Will do a proper catch up and read posts when I can keep my eyes open longer. Off to bed as just finished work but long weekend off 👏🎉❤️🎈

Highlighted
Member

Re: Darling buddies from May - moving on

Hi everyone, just wanted to see how you all are. Nicky hope the treatments have calmed down so you can keep on this amazing treatment. Any more results from it? Fingers crossed still encouragingly good 🙂

Carole  and Lisa, how are you both getting on? Hope all the families are well. Lisa how is self-distancing going at work? Are there many people in the office? We cannot all go in at the same time which is very inconvenient.  Carole did it turn out to be a good year for fruit and veg? How are you feeling now? Has the physio helped at all?

I feel quite sad with the new ruling for only 6 people as it means I can't have one of my daughters round. The other 2 are smaller families so can fit in any time. We will manage something but it means they are the only ones caught by the ruling. It had to be the one with 2 children's birthdays coming up as well! Its been another lovely warm day and I wish I could stay on warm and never have to defrost the car again. Work was really tough at first and I thought I might need to just give up as all my foot problems have restarted and so painful to walk. I've been resting them as much as possible and wearing a different pair of cushioned shoes every day to work and that seems to be manageable for now. Will see how long I can keep going. There is not a day or a class where I do not have students off being tested or isolated but no positive student so far. That will change a lot. Well better get off and put my feet up. Take care Love Lily xxx

Highlighted
Member

Re: Darling buddies from May - moving on

Hello everyone, how are you? Nick I was so pleased to hear that after a lot of effort and time, they have sorted out the side effects. What a relief and it must have been such a worrying wait as things progressed. Piriton completely knocks me out, especially when given iv. Gets me really quickly too.  I had that prickling reaction too, it was all at the top of my nose and quite uncomfortable, so it is called swimmer's nose but after that it goes into a massive headache they told me. Not the kind of thing you want as every symptom makes you double think what it could be 😞   It sounds like things are settling well and are you still having a positive effect on your tumour markers? I used to be so reassured when they dropped even though the consultant tried to convince me they were unreliable for primaries. Have you just got to pack your mum's house up or downsize and get rid of a lot? Otherwise she could pay more and have the whole lot packed and take it all with her. Talking of brothers, its the anniversary of losing mine and mum really rattled my cage and tried to make me feel bad that I had not gone into some sort of dark mood to prepare for the day like her. I totally understand her level of grief but she can't accept that people react differently and I deliberately don't memorise dates of deaths or write them in a diary. Some you never forget but after a while I prefer to think about nice memories of them or think of them on their birthday. So I was made to feel guilty that I hadn't rushed over from work. I was struggling that day and just had to get home and close my eyes. had flashing lights all week which made me feel yuk at times. I took my uncle over to visit her today after doing all their shopping, and mine for the week, also taking my uncle to a flu session for shielded patients plus his check up. She seemed much more responsive at least but its very rare I even get a thank you, despite having to get up really early to fit it all in and get him home in time for his lunch being delivered. Whatever I do never seems to be quite enough. Apparently my brother was absolutely marvellous!!!!! Good for him!  Nick I know urine infections make old folk go really weird. Hopefully it will respond quickly. Carole is mum going through another worrying stage at the moment? I sometimes wonder if I will be old and struggling myself by the time I finish looking after my two. 

Carole I would be very worried about a snake too as I don't like them at all. I have not heard of that variety, are they poisonous? I hope not. Another condition for you to have to put up with, poor you. I think the condition you had became well known when Maggie Thatcher had it and its genetic so who do you think you got it from? Anyone in the family you remember? I hope they can treat it or would you prefer an operation? I think your diabetes will affect what they decide to do and how bad it is. Is this the autoimmune they were investigating or another different condition?

Sorry its a quick response but its been a long day and work is really hard as my foot pain is back and they hurt so much i just don't know what to do. I think I have the heel condition back again. Sorry its a moany post everyone. Will try to be more cheery. Hugs Lily xx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi Carole

My brothers are generally pretty good but boy do you have to nudge a man to do - or see - anything!  Unfortunately my younger brother lives in the Greater Manchester area which is the centre of a local lockdown/restrictions otherwise he would have been down to visit before now.  my elder brother, bless him, seems to think the sole purpose of a visit is to take Mum out for lunch.  Which, although very nice and thoughtful, doesn't get the sorting out done!  I did leave him a long list of things to do last week which seem to have been done. I have spelt it out in no certain terms that I can't be relied on to help on any given day, whether organised beforehand or not, so they do both know.  It's just they live either an hour and a half away or 4 hours away so they can hardly pop in like I can.  I'm sure it will be done in time for the actual move, yikes!

As to your Mum, the dreaded urine infection!  Isn't it odd how it affects the elderly in such a way.  In fact I'd heard about it in elderly ladies but only realised it affects elderly men as well when my FIL had one just before he was re-admitted to the care home.  Completely off his trolley until the antibiotics kicked in!

Good luck to your daughter, I hope she gets accepted as a supply teacher and it's nearby if she does.

Nicky x

Highlighted
Member

Re: Darling buddies from May - moving on

Hi all

Nicky I'm so pleased that your awful side effects have calmed down so now you can try and get on with the new normality, of Covid life continuing. Sorry to hear that sorting out your Mums house has fallen to you, with two brothers not pulling their weight. It's not fair and you have every right to moan, I doubt your brothers are coping with what you're going through?   

We have similar, my sister who is 73 and has not been to visit my Mum in her nursing home since the beginning of lockdown, understandably, but she has taken over a few bits and pieces of shopping and seen Mum through the door.   My brother does barely anything, he lives the closest to Mum but doesn't phone her or visit her.   My sister and I phone Mum every day and discovered on Monday mum was extremely confused, her carers say she was packing a back to go home. Consequently it was discovered yesterday Mum has a urine infection!

Lily how did your first day at school, do you wear a mask or visor?   Here the teachers have to wear a mask for the entire school day. YD who has applied to teach English locally says that some teachers don't want to wear masks so are going off sick.   This should work out good for YD as it's a locum teacher post she is after. Try not to stress or worry, you know the precautions to take and I assume your students are spread out?

We had about 3 days of rain which was very much needed, and now it's back to sunny, even up to 24 degrees by the afternoon, which is a much nicer heat.   It does get chilly though overnight so I have a quilt back on the bed.

Our choc lab is suffering from an allergy to harvest mites, constantly scratching and licking his feet.   The blighters get in between the toes and all areas where there is a crease.  He is on anti histamines although they don't seem to be doing much good.

I didn't mention before that for a week in August we let a room to air bnb.  It involved a lot of bed changing, and cleaning but other than that we didn't see the guests after they arrived.

My physio has diagnosed dupuytrens disease in my hands. I'm seeing my GP tomorrow to see what she thinks, and like we do, after googling I've found that there is no cure but cortisone injections, or an operation to release the cords can help.   Normally it makes the fingers bend into the palm, what I have is the opposite and can't bend the 3rd and 4th fingers into the palm. Trust me to be  different.

Last night one of the cats was playing with something so I went to investigate.  It was dead, about 12 inches long so I assumed it was a slow worm. However after posting pictures of it, it turns out to be a western whip snake (yuk) but a baby one.   Does this mean I have a Mummy snake lurking about??? Really don't like snakes.

Well on that note, a quick hello to Lisa, hope you're ok, and I'm off to potter in the garden as the beans are growing like mad and need picking each day along with the cherry tomatoes. Take care and stay safe Love Carole xx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi everyone, and thank you for thinking of me and asking how I am (as ever) Lily.

The side effects have calmed down which is such a relief. I really did think that I’d found a drug that worked only to know that I couldn’t take it due to the horrendous side effects.  Basically what one of the oncologists said would happen has, that my own immune system has reacted to the new drug (strongly) initially but launched its own defence when introduced to it. Once I went back onto the drug I was taking a lot of piriton and another type of anti histamine (which you shouldn’t really take together by the consultants both said I could). I was still feeling a prickling sensation nearly every 4 hours as the piriton dose wore off, the other antihistamine is a once a day one. However that gradually decreased over a few days so I was taking less piriton, which was good as it was making me drowsy! So now I just take a once a day antihistamine and that’s it, hooray. Am also not getting any of the other significant SEs that are listed so that is also a plus.  And not quite so many hospital visits for appointments which I wouldn’t have minded ordinarily but they are still in Winchester which is quite a hike for me. Fingers crossed the main inhibitor drug is working, a scan due soon give me that answer. Other than that just dying to get back some form of normality, not just from my treatment point of view but also how we live with the new, post (or continuing) COVID world.

I hope that your anxieties about going back to work are unfounded and that the protection or systems that have been put in place work. It must be worrying when you are in your position Lily of helping with vulnerable family members outside of work and, not being alarmist, being in the age group itself that is more vulnerable. It’s all well and good for all the younger teachers as all cases below the age of 45 are very small in number but once we all get above 60 it’s quite a hike in the figures. Something my ‘healthy’ ie non-cancer friends seem to have totally disregarded when they have been going about their daily routines!
Anyway we  are planning, or have planned a break in a few weeks near the coast but will wait and see what lockdown life brings with regards to new restrictions before we start thinking what we can do and looking forward to it. Who knows, we may not be able to go (it is still in the UK) as various areas have more measures introduced. But it’s not to visit my brother in the North West where they have had all those restrictions in place for weeks but are now being let out! He says it hasn’t affected them too much, as he works from home and his wife works for the NHS (it’s more aimed at the social gatherings that broke all the rules) but did mean he couldn’t visit and help out at my Mums who is still on to move house! I have unfortunately had to step in and do yet more sorting and clearing as neither brother has been able to, which does in fact annoy me. But I have told them I’m not getting involved too much, or committing to too much as I can’t. With any luck her actual move will be whilst we’re away and they can see just how busy and frantic it will be instead of me doing it all.

Moan over. How are you, Lisa andCarole? Let us know how life is where you are nd how you are coping with all the COVID stuff as well as all the other health and life issues you might have.

Nicky xx

Highlighted
Member

Re: Darling buddies from May - moving on

Hi, just wanted to check how you all are. So much rain recently and its starting to feel cool in the evening. I will be putting my heating on soon if it stays like this. Back to work tomorrow and feeling a but anxious about that. I have been really careful with social distancing but that is going out the window when I go back to work. I see so many people. Not terribly happy at all about going back tbh. 

Nicky I was wondering what had been happening with your new treatment. I was worried you might have to stop it if the side effects became too difficult. I hope not as it had been so positive from the start. Fingers crossed it is still ok xx

Lily x

Highlighted
Member

Re: Darling buddies from May - moving on

Hello everyone, hope you are all ok. After the hottest weather in a long time and continuous, the rain got to us today. Instant floods on busy roads in to the city and then it just all disappeared. No problems here but i guess some people will have struggled. Quite bizarre weather with huge differences between us and the girls just a mile or two away. Then lots of thunder and lightning which we have enjoyed watching and now some cooler weather and more rain. Crazy weather this summer. Been a tough time with A level results and now hurtling towards the GCSE crisis. If they decide to tell every students what grade their teacher gave them, will there be repercussions? Will they challenge teachers in public or do worse if they know where they live? Just such a worry about students' mental health from not getting grades for uni/careers. I feel very disappointed for so many people. Our eldest is the year just moving into year 11 and I think they are in an even bigger fix, having missed 6 months of school and taking their first exams in 8 months time! I am the biggest nag in the world trying to get him started now, arranging revision guides, etc. I hope anyone you know who took exams has been able to carry on with their plans.

Carole the blood story was bloody awful. It sounds like a nightmare to me and I was praying the story would not end with them going for the groin 😞   Its their job to be able to get access and they need to practice on oranges until they have better control. I would have cried 😞  I don't know much about those types of drugs. I am assuming this would be very serious with covid19 around and you would need to virtually shield again? Such a difficult decision to make when a drug that helps you causes such damage and risk. Nicky the same for you of course. Any news, have they modified your dosage or given you meds to counteract the side effects better? Such a tough thing when the drugs have had such a great early effect. I hope they can help you with this.  

Lisa did you send me your rain? It has been like a tap turned on and forgot to stop at times. As you said, the lawn will like it. I am protesting and keeping my shorts on, no matter what! Much love to all. Lily xx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi Carole

Ouch, that sounds awful. From all the years I’ve had to have medical people stick needles in me to get blood out I know how horrible it is when they attempt it so many times. They almost forget that you are a human in their quest! And then to take 9 vials, I had that once at The Marsden (ahead of a potential trial) and that’s a lot of blood. You almost feel like you’ve been to a blood donor session when they’ve had that much so no wonder you felt upset and bruised. Hope that after all that they get some answers for you.

I must admit with the steroids, apart from their other side effects, I have been worried about the increased blood sugar. The new treatment I’m on also raises blood glucose levels so I’ve been given a monitor to check it in between the usual blood tests I have done. I was horribly high the other day and I was getting a bit worried but yesterday, after coming off the steroids it’s back into the low normal range. Phew.

Take care in that heat. I know when we were last in France for the wedding a few years ago it was unbelievably hot, high 30’s which didn’t drop at night much. We had stayed in more traditional places which of course had no air conditioning so a few uncomfortable nights and hot days. At least you can have a swim to cool off.

Nicky x

Highlighted
Member

Re: Darling buddies from May - moving on

Morning ladies, it looks for you and for me the weekend will be sunny and warm.  Our temperature is going to hit around 40 degrees.  I don't like it that hot, 25 is about my ideal.   I am a bit fed up of having a sweaty neck, back and hair is always dripping.

Nicky I am so sorry you are having such a tough time, I can only imagine how awful the itching was.   It drives me nuts when I have an insect bite which is nothing compared to yours.  It must be dreadful experiencing this side effects, especially when you know that the drug is helping.  Yes, steroids also impact on the blood sugar, which is why I'm trying to avoid taking them as they always upset my levels. It's fantastic news that your D has a new job. Being a chef during these times means it is very difficult to social distance, as Mr P has found out. Yes, it is very anti social and almost always involves working weekends, and even on Christmas Day which I always found hard.   

Lily, your 45 minute D experience sounds grim.   I don't know how you managed to keep your mouth open for so long.   Did you have little breaks from the treatment in order to open/close your mouth? Wow that was a big bill. As for the camper van, not really my type of holiday either.   Caravanning is better because once parked up you still have a car to get around.   At the moment things are so unsure because of restrictions, even over Europe. I see the UK is also going to see about quarantining again from France.  

I had a rather horrible experience yesterday. I had an appointment with an auto immune doctor.   He decided he wanted me to have a blood test so he can be sure what, if any treatment I might need.  Obviously immuno suppressants are powerful drugs.   So I had a nurse try to take blood, she tried 2 times to find a vein but couldn't. So then her colleague had a try, he managed to find a vein lower down my arm but couldn't only get enough blood out to fill 3 of the 10 vials.   Then I was sent off to the laboratory so a more experienced phlebotomist could try.   Well no such luck!! She tried 2 times in my arm, 1 time in my wrist, 1 time in my leg and then decided to go in the back of my hand.   Experienced???? I think not.   Eventually she managed to fill 9 and a half vials, leaving me sore, stressed and generally upset. Several bruises are appearing today.

So on that note I will say cheerio and enjoy the sun this weekend but stay safe buddies XXXX

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi Lily

I know how frustrating it is when you lose a long post. It takes a few days to decide if you have the energy to re-type all the very succinct points and information you put in the first one!!  Have done it several times and will copy this one before posting as well.

So, thank you for all the info you sent.  I feel I can now give an update.

It's been a real struggle over the past few weeks since eventually starting the inhibitor drug, yes it is Aselisib.  Firstly it was going so well then a bad rash started which meant I had to stop that side of the treatment, and go onto high dose steroids to get it to calm down.  It was classed as a grade 3 rash, grade 4 being even worse and meaning you have to stop the drug so you can imagine I didn't want to do that. So 2 weeks now of steroids, yuk, no sleep, but weaning myself off them so I should stop them today.  Hopefully they have not been adding extra protection against a re-appearance of the rash and I won't need them, at least for now.  So, Rash had gone, I saw my onc and re-started the tablets last Tuesday only to have a dreadful flare up and redness on my neck and part of my arms (but no rash) and then the worst itching possible - another sleepless night. Stopped the tablets again! That all went very quickly, surprisingly, so I re-started them again last Friday and have been stuffed to the gills with anti-histamines (mainly piriton)  which is definitely helping but I do get the odd tingly feeling an hour or so after I've had the tablets so I'm very wary at the moment of what is to come, or will they help enough.  All anxious times, as usual for me when starting a new treatment.  And I do need this to work as it is a real life line (quite literally!). My tumour markers continue to drop in large chunks, although they had become ridiculously high whilst chemo hadn't worked, so I know it is the right drug, I just have to battle away at the side effects.  Fingers crossed. However, as ever when I start on a new treatment there is so much adjusting to do and things to work out, plus the energy it saps from you, that it's easier just to say nothing to anyone until at least some of it starts to show some normality or consistency which is why I haven't been posting any updates.  As to the mouth ulcers so far they haven't come back but then again they only appeared about 10 days into the course so I'm expecting them but do have a whole load of mouth washes and gels to put on them.  Annoyingly I had one so far under my tongue at the back of my throat it took my a while to work out where it was and needed a cotton bud to reach it to treat it. That meant for a couple of days it just got worse which is when I felt so rotten with them.  After I managed to get to it it did clear up relatively quickly.  Also the ice lolly/cube trick doesn't work with daily tablets unfortunately. It's worked very well for me during IV chemo (it works like the cold cap and protects the inside of the mouth by freezing it as the chemo is administered), but I can't use it with these unfortunately.

The steroids are not dex they are specifically to treat the rash, but I did still get the slapped cheek look, as everyone does, on the first or second day of them.  So they aren't causing the rash, its the allergic reaction to the inhibitor drug.

So, I will let you know how things go.  At the moment not sign of needing imodium (but I was stocked up by the hospital pharmacy just in case) or diabetes which is the biggest side effect.  I have a glucose monitor to use but I've learnt that steroids also push up the blood sugars so it's a bit high at present but had been normal so I hope it returns to normal when the steroids stop.

 

Onto you Lily. Sorry to hear your long visit to the unspeakable D place.  It's bad enough for anyone let alone anyone hating the place.  Well done you though and I hope the finishing appointment is not as long or worrying, hopefully that will be that, other than the huge bills to pay!  A shame for everyone this year about holidays but, like you, I don't think we would risk it, certainly not flying anyway.  If anything we might hop across the Channel to France later in the year for our anniversary but if not we will have to treat ourselves in the UK - as long as we're not lockdowned again.

Anyway some good news in all of this is that YD now has a new job.  She had been concerned about going back to work and how it would all be once restaurants were able to open again.  It's not just the customers that have to be socailly distanced, it's the chefs as well and thought there was no way it would be as it was.  She loved where she worked and the people but extra distancing, shifts, smaller team would mean it wasn't the same.  So on the day she was having a big waver she got a message out of the blue from her old boss.  He said it was a long shot but he had just written a job spec for a new role where he's just joined and as he wrote it he thought she fitted the bill exactly.  It's not as a chef but as new product development in a food producer which covers her love and knowledge of food plus uses all the skills she acquired when she used to work in the commercial world.  So after many interview processes (far more than he lead her to understand!) she got the job.  This is great news as it's double the pay she was on and about half the hours!  Being a chef does not pay well and it's incredibly anti-social.  There's travel included as well, when allowed, so it sounds perfect and right up her street.  In fact she has since been speaking to another chef friend of hers who has said that he knows of quite a few who are leaving the industry at the moment.  There’s so much uncertainty about whether places get shut down again so it’s not surprising and  maybe some have taken the time whilst being furloughed to re assess what they want to do.

Anyway better sign off now, I’ve just had a major catastrophe with my pc and split tea all over it! Oops

Nicky x

Highlighted
Member

Re: Darling buddies from May - moving on

Hello everyone, I am so sorry I have not replied but I wrote a really long post and was so frustrated when it deleted it. Its taken me this long to start writing again! I will see if I can retrace my thoughts from before. 

First of all Nicky definitely offload anything you want on us. This is so bloody frustrating to have horrible side effects when the effect on the tumour markers has been so promising. On the other hand it is making such a difference hooray hooray. So I hope they will let you stay on this treatment and that no side effects pop up of the type that they refuse it. You will just have to moan your head off to us while it works its magic. I am secretly very very pleased to hear about the early results, even though I am trying really hard to be appalled at the side effects. So chuffed for you (except the bloody awful parts). So I am going to put my mind to try to think of things we used to do. We rarely had mouth ulcers but Joanne invented the eating lollies cure remember? That was to eat lollies during the treatment to freeze and thereby protect the tongue. We also used to drink like crazy to get the drugs out of the system and reduce the amount of damage time they had inside. I looked up mouth ulcers and there are some mouthwash style products too that might get to more awkward spots easier than cream. Crikey I had that horrible slug ointment I had to put on my tongue, horrible! Then there are some natural remedies that might be worth a shot. I found this for you.

Home remedies for ulcers on tongue

1.Aloe vera...

2.Baking soda...

3.Milk of magnesia...

4.Hydrogen peroxide...

5.Salt water...

6.Honey...

7.Coconut oil...

I read that honey coats it to stop moisture getting out, that sounded the most pleasant on the list.

The longer journey too grrr. Can you get family to drive you sometimes so you can at least switch off from the traffic as well as having someone to chat to, always passes the time faster.  If not you need to get some new cds for the car to singalong to. Hopefully by early September the holiday traffic will ease up. The other person I sort of know who is on targeted therapy is at Addenbrookes and has been completely taken off her treatment which was also very successful. She is not allowed to have it during covid time. That would be such a worrying thing to do to someone. Its so expensive there is no chance of her going privately. I would find that so hard to accept. Do you get side effects from the fulvestrant? So very frustrating to be taken off the tablets for the rash. Could you have piriton to counteract it? I had to have it iv after getting swimmers' nose on CMF as a precaution. It is used for rashes and hives so I would have thought it would be something you could at least try? Well when it comes to the steroid story I am in complete empathy with you as I have been suffering the same fate. Hands over ears Lisa its a D story. As I told you, one of my crowns completely snapped off at the start of the year and I had to have the root drilled out and wear a false tooth. I was just about to go for implant surgery when covid shut down all the dentists. Mine actually stayed open but only for emergencies so I have been enjoying many months of knowing I was completely safe from the dentist. Then came the fateful day when they rang to re-book. I haven't been able to think about anything else as the day got nearer for my 2 hour appointment. Anyway I went last week. I was not allowed to have a sedative due to cranky chemo veins and self-distancing. Nobody wanted to take the veins on, so had to be 100% awake 😞    .I would have been a lot less anxious if I had known that a lot of that time was actually them deep cleaning the surgery before and after for a surgical procedure. I was actually in the chair for about 45 minutes. I was wrapped in surgical sheeting, rather too much like a body bag for my liking! Then I had a lot of injections but only one made me really squeak. After that it was ok and I came out with stitches, dexamethasone, antibiotics and a pile of paracetamol. My first deposit payment was £1100 which is in addition to the bill to remove the tooth and make a denture to cover the gap. I asked the dentist which steroid it was as I had to take them before I left the surgery. He was explaining that they are the new covid treatment called dexamethasone and I was thinking oh no I wonder if they still make me crazy and hyperactive So Nicky I got the red sun tanned face again for a few days, I was boiling hot but no temperature and totally unable to sleep. I think I slept one hour the first night and a bit more the next night but got up at least 5 times to go to investigate things that suddenly popped up in my head. Victor said it was like sleeping with someone on lsd ha ha. I can remember going through the medical cabinet for the thermometer, checking all the windows, changing all the pillows, finding a fan and putting it on and off.  It was a very busy night until I eventually crashed out. I went round Tescos in a complete blur and later wondered if I should have been driving. In fact it was all the effects that I thought came from the chemo drugs. Bizarre. So I have been having a good time on the little tablets with you. This Thursday I have to have the stitches out, yuk, another scary visit. Then in a couple of months I have scans and have the tooth fitted and pay a lot more money. Sorry that story went on a bit. So Nick I wonder if the steroids are part/all of the rash for you too? Might be worth mentioning and seeing if you could reduce the number of tablets and/or number of days you take them.  Really glad to hear you got away for a few days. I love the Hastings area and we really like the town of Battle as well. So much history around there and the sea air always makes you feel better. You need to just do everything nice you can to put up with the bad days. Are you keeping a diary so you know when to expect the side effects and plan quieter days? I hope you can tolerate the treatment and do bear in mind my rash from just the first day of dexa. Maybe because we have had so many in the past? Most of all I am so pleased it is working so well and hope that they can modify the levels to allow you to stay on it but with a bit less discomfort. xx 

Lisa sorry about the horrendous story at the you know. I was petrified. Now all the shielded people are out more perhaps you could take mum and dad out to somewhere like garden centres where you are not in crowds and outside. That might be better than the big tourist spots around you. Hopefully they will all go home as schools start back. Dad will need some new hobbies and things to distract him without work. What kind of things does he like to do? Its a shame to leave friends there but he is at an age where he should be able to do what he wants rather than go to work every morning. I know he probably really enjoyed it but they say people live longer if they get rid of the pressure of work. Also the risk of catching covid.  You mentioned Tenerife being a less risky place but I just don't think I feel confident being on a plane full of people and hoping they don't sneak their masks off or using the toilet after people. So its a not to abroad for me for a while. They say Greece is pretty low risk but I am not going. The weather is so different from north to south at times. I am constantly watering my lawn but I have such a good tan this summer. Which would you prefer? I did have a lovely day out on the coast with some of the family who hired a beach hut. It was perfect and we had a lovely long day on the coast with cream teas and just lounged around. Perfect. Carole you mentioned holidays too.  I think if I lived on mainland Europe I would be happy to hop over a border. Victor is tall and he cannot fit into a caravan bed without taking the whole space up so I am not sure I would get him in a camper van haha. He would be hitting his head every 5 minutes. I am not at all keen on camping either and insects really spook me. So i think its going to have to be stay home or go to a hotel this year. I am wondering about later this year but would you book? I think we might just see how it is and take a last minute break if we go at all. All our anniversary celebrations had to be cancelled and my birthday ones. Not the best year to celebrate. Can you believe our very youngest had his first birthday this week :). We missed so much of his early months. I hope that your physio may start to become more effective over time. They always told me it would hurt more before it got better, which is hard to put up with. I hope you get on better soon.

Well better see if I lose this one too. Might copy it just in case. Take care. Nicky stick with it and just keep typing posts to let off steam. Hugs Lily  xxx

Highlighted
Member

Re: Darling buddies from May - moving on

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

Highlighted
Member

Re: Darling buddies from May - moving on

Hi all, quick pop in from me, Nicky the bloody bloody side effects sound horrendous and that ulcer had me crossing my legs in pain for you, imagine not being able to eat, I've shoved everything possible in my gob (Cumbria lingo). It was great to hear that they are working though and you've had a few days away.

Carol your fingers still sound so painful, but your weather and garden sound lovely x

Lily, bet you're glad of a nice long break. I agree re holidays tenerife seem to be handling it great but it's the journey and I struggle with masks. Weather lousy but it's helping my turf.

Not much to report here, hoping for some nicer weather this week and I've taken a week off, works been so crazy and I've been getting grumpy but it's not great when you can't do much. I've only been parents and supermarket so struggled with same 4 walls. Brother had camping weekend about 40mins away so we pooped along for day with folks and was lovely to get out. I've not done much cos of parents, dad's left work on Friday as was porter at hospital and being 71 with underlying conditions not safe, he's gutted and they are fed up, was hoping for wee caravan break locally but not sure as they are wary and it's packed with everyone flocking to the lakes. Anyhow planned two meals out with friends at weekend but nervous and wondering about avoiding parents after I've done it as paranoid about germs, it's hard trying to balance a little bit of normality with safety. 

 

Better log off, love to all and stay safe x

 

Highlighted
Member

Re: Darling buddies from May - moving on

Hi ladies

Lily you must be relieved that summer holidays are here, but, what a different summer this year will be.   I'm with you on not wanting to fly so have you decided where your staycation will be?   I've visited Somerset and Devon quite a bit in my younger years, or have you thought about hiring a camper van so you can have your own accommodation and even cater for yourselves if you want.   Probably not your idea of a holiday as you are used to flying and staying in a hotel. Mr P has quite strict controls on his ferry and usually changes into something sloppy (eg house clothes) as soon as he gets in.

Nicky your side effects sound horrid, what will they do to help alleviate them?   Maybe a lower dose of the treatment and build up slowly?   I don't know if this is possible but if it worked in just 2 weeks it must be pretty powerful stuff.  Your days away sounds nice, I'm jealous of you having fish and chips😁.

Hope you're ok Lisa?

Our weather has been mostly hot, too hot to be outside sometimes and some evenings and during the nights it has been difficult to sleep.   Today is a welcome relief as it is cloudy and much cooler.

I started seeing a different physio for my hands, fingers which still won't bend without pain he is manipulating and using the ultrasonic machine. Not much improvement after 5 sessions so far. The auto immune bit of my blood test still shows positive, so for this I am seeing a specialist and hope to get some answers.   The problem with my  hands has been nearly 2 years now.   Peeling potatoes, a simple every day task is very hard

Most of our green veg has been massacred by the white cabbage butterfly and caterpillars, although our cabbages seem to have survived this attack and are very nice, our tomatoes are just about turning a bit red and our green beans are growing well but not producing beans yet.

Better get on, i've got watering to do.  Love Carole xxx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi ladies

Yes it’s been a while since I posted but I’ve had a few ups and downs with the new treatment, as always happens when you change and that has been taking up my attention trying to get it sorted.

So I’ll off load all the cr@p I’ve been dealing with, then do a general update.

I now have to travel to Winchester for my appointments, either hospital or face to face oncology, which, although is a safe environment, is not the same as I have been doing for the past 17 years with BC which has been locally about 10 mins down the road. Normally no problem to get there, Winchester, by now there’s more traffic on the roads I have to allow extra time, especially as it’s a popular holiday route to the South West so the motorway is often jammed. That’s just one of my hassles at the moment when I’m having to go more often.

I started the Fulvestrant element of the treatment about 4 weeks ago and then, once funding had been approved I started the expensive element! This is just a case of picking up the tablets, plus a carrier bag full of meds for the side effects (that should have warned me!) and taking them at home. First couple of weeks were OK, minor SEs mainly a bit of nausea when taking the tablets. Then the real SEs kicked in, obviously as there’s more of the drug in my body. So a slight rash to begin with, nothing too much and did fade a bit. Then last week the real rash started! Horrible looking and  itchy as anything. Plus an awful ulcer on my tongue which rubbed when eating, talking or anything. So another ‘quick’ trip to the hospital thisMonday having already been there on Friday for my injections, to be assessed. Outcome was to stop the tablets to allow things to settle down plus take a bunch of steroids (my favourite insomnia cause), creams, antihistamines  and goodness knows what else. This is expected when SEs get so bad but annoying knowing that the drug is working as shown by my tumour markers dropping substantially even in the first 2 weeks. So my skin is less crocodile looking (lovely), still itchy and the mouth ulcer/s which are in an awkward place under the back of one side of my tongue (therefore making it almost impossible to get any gel on them) continue to cause me pain. Not so much as a few days ago when I could hardly swallow or speak. So not a happy bunny and as you can see what with trips up and down the motorway, phone calls, blood tests, face to face and phone appointments I’ve been busy!
Onto the better part of my week though. OH and I had said we would go away for a couple of days this week, as much for him as for me (this was before all the SEs kicked in). We decided to go ahead anyway, with me packing my whole pharmacy up to take with me ha ha. So we have had a couple of nights in Kent to do a bit of R and R, go to the sea, have fish and chips etc. Weather has been great, just right amount of sun - with me covered up to stop it burning any delicate skin that’s already full of rash. We had hoped to visit some of the castles and gardens in the area but one thing COVID has done is stop you going anywhere like that on the spur of the moment - you need to book tickets by 3 pm latest on the day before you want to go! Understandable, although not sure why 3pm when they already know their maximum allowed numbers at any time slot, but it’s meant we haven’t been able to as the popular slots are already booked! Never mind, we’ve enjoyed our exploring in the old towns of Hastings and Rye and just sitting on the pebbly beach with a lovely view.

So, a long (overdue) update and will add another when I get through this phase and back to a more normal, or should I say predictable, phase.

Take care all, sorry I’ve not commented on any of your news but I needed to offload, but I have read all the posts. Take care and keep safe.

Nicky x 

Highlighted
Member

Re: Darling buddies from May - moving on

Hello buddies, how are you all? The weather here is so changeable, with baking hot days where you just want to be in the shade and then the usual grey cloudy days. Such a mix but still short weather 🙂 I have finished work now and it is nice to not have to do all the work online but its not like the usual holiday. I don't feel confident to travel abroad, mainly because of being on the flight and relying on others to follow the rules/ That might not be fair but I also think if I got there and found myself ill from the flight, I would be in a terrible panic in case stuck there and one of us on a ventilator, if really unlucky. So its the UK for us but I can't find any holidays so its home!! Have any of you booked anything? Carole you could travel without going on a plane but is your diabetes making you more cautious? I bet you have Mr P straight in the shower and all clothes changed when he gets home from the ferry trips. My daughter makes her husband who is a posty strip in the porch and shower before he sees the baby. Have a you got a very hot spell in France or the same as us, different every day?  

Nicky how are you getting on with the side effects of the drugs and the hormones. Been a little bit quiet so I hope all is well with the family and you. Also that you can tolerate the drugs. Some you get used to I think and others build in toxicity to get a bit worse each time. Hoping you are doing well on this. How many days do you get when you need to take it easy? Keep me posted how you are xx

Lisa is the sun getting up north to you? I look at the temperature on the weather and you are often a lot lower than us. Can't we tempt you to come south? 🙂  Hope mum and dad are keeping well too. Are you back at work now? Better buzz off . Hope all is well love Lily xx

Highlighted
Member

Re: Darling buddies from May - moving on

Hello everyone, how are you all? I am whizzing towards the end of term but its usually an exciting time. Not this year but at least my days will be my own as so busy working from home and every week someone decides to give us another big job to do. Online lessons are draining and you just don't know if they are any use as so little response. We re just starting to hear what September will look like and I wish I was retired to be honest. I'm a bit stressed about how much running around I am now going to have to do at a time when I can't carry heavy things and dash everywhere. Looking forward to seeing the kids though.

Nicky I did look some things up as I like to be able to discuss things with you and support you. Are you having Alpelisib (Piqray) and fulvestrant? There are so many new things around, its excellent that so many new treatment types have opened up. I did read that this one has a  lot of reactions with other drugs but on the ordinary types it mentioned not buying anything across the counter or taking vitamin supplements or anything herbal. It had reactions with a lot of drugs that you will probably never need but it does include diclofenac (volterol, etc) and ibuprofen. So be on your guard and check if you get anything at all. I am sure you are already on the case with that. It sounds a wonderful drug and I am always astounded how researchers work these things out, so clever but as you say there are a lot of things to look out for. Hopefully you will be able to tolerate it nicely but did you report the rash? I can see its a common side effect but like all rashes it needs monitoring. I also read you have to watch out for the runs and need to take Imodium quickly if it starts, so just checking it is in your cupboard already?? Brilliant to have tablets rather than needles as I think you are good at taking them, unlike me. Hopeless! I am keeping my fingers crossed as always and so good you feel an improvement already:). Keep your food content high to help counteract the drugs and drink lots please. Ok  I will stop now 🙂

We had a lovely anniversary, not quite the big occasion we had thought we might have. We planned to hire a big narrow boat for a sail through all the locks with food and drink on board. However a sneaky party in the garden, albeit separated/self distancing with my nearest and dearest was perfect and more than I expected. Our problem is the number in our family to be all together. Anyway we had a really nice time and the girls had contacted so many people and they had sent in messages for us, which are all on a lovely cd to keep. The littles made me very emotional, so sweet and lots of messages from people overseas, just about every relative we have and some we are unlikely to get to see now. It was perfect. I am waiting to choose my ruby gift when I can shop more comfortably. Not a major red fan so thinking about what I would like. Still not really going to many places, just food shops. I think I need to get braver but I have to go in to both my oldies so should I? Its a dilemma. Lisa how are you getting on now? Can you see your parents? Are you going out to places yet? Carole thinking of you too and hope you have some company from the family before too long. Love Lily xx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi

To all your questions I think the mutation is only BC related, nothing I had prior to BC. In fact the mutation that is being targeted with the new drug I'm on is one that 40% of BC people have!  Worrying but until drugs become cheaper and more accessible there's no routine screening.  This was brought up at a recent oncology conference (virtual of course) that my own oncologist told me about.

A long list of SEs which I'm keeping an eye on with monitoring (blood sugars, blood pressure, blood tests etc) but one of them, a rash, has just started so will have to see if anti histamines will help.  Certainly at the moment I feel it is working, the first time I've actually felt something get better, just shows how uncomfortable it had all become.  You are right about winning the lottery Lily. I would have needed to to pay for this drug!  The CDK inhibitors are just about 'affordable' if you self funded but this one, no way!

So other than getting used to this treatment (which is daily tablets plus a 4 weekly hormone injection, so not too many visits to hospital) we are also adjusting to less lockdown.

Have had an inside visit to my Mum's, but kept mainly apart, plus have had daughter and family here at ours, for a cuppa.  YD has gone back to London now and keeping fingers crossed that she gets a job that she was contacted about by a previous boss.  Not at a professional chef but in a commercial role in the food industry (using her previous experience and training before she trained to be a chef). Very boring for her at present though with nothing to do until she hears about it, interviews are still ongoing so there's a bit of a wait.

Weather is very unpredictable here in the South, wet today but should be drier and sunnier later in the week, nothing as hot as we had a few weeks ago, and almost all of May which was lovely.  June was very up and down.  Carole, if you're enjoying your kale try it roasted in the oven, it's delicious and the only way I like it!  Just look for a recipe online, very easy and quick, nice for a snack of kale crisps as well!

Lily, I hope your ruby anniversary gathering went well and you enjoyed yourselves. A different celebration I'm sure to the one you had planned but nice either way.  We were celebrating my brothers 60th birthday yesterday - on a zoom call with the big party that was planned for this coming Saturday now on hold.  He had a good day though with family and it's difficult for us all to get together as we are so far flung anyway.  The zoom calls have become a regular weekly event for us all so we're probably more in touch than before COVID!

Lisa, enjoy your gardening and hope the weather has improved where you are.

Hope all of you and yours are all keeping well.

Nicky x

Highlighted
Member

Re: Darling buddies from May - moving on

Hello all, nice to see posts from everyone.

Nicky, I looked up the 2 gene mutations, gosh it's scary isn't it how our bodies can produce these defects. Did I understand correctly that the mutations were something you were born with?   Or, is it something that derives from the cancer mutations.  Sorry if my questions sound a bit daft, I also looked up the side effects and can sincerely say that I hope you find this inhibitor easier than chemo. In any case we all hope that this new treatment will kick the buggers away.

Lily, very sorry for the confusion. How is your garden renovating going?   How is the new puppy getting on, is she easy to housetrain?   Hope all your elderly's are keeping safe.

Lisa, do you enjoy gardening?   Has your weather improved?  Hope you and your family are staying safe.

Our raised beds are producing well, except for one type of lettuce.   We have already had the broccoli and some kale which was delicious.  The good thing about this plant is the more you pick the more it grows. We've had to keep out the white cabbage butterfly, who's offspring completely destroy green veg.   We have tomatoes and cucumbers too.

YD's divorce interpretation went ok, she was pleased with how it went. Hopefully there will be lots more in the future and hopefully too she will become an authenticated translator as there will be lots of documents needing translating owing to Brexit.

My constant cough got the better of me as it was keeping me awake for a few hours at night. So my dr gave me a ventolin inhaler which has really helped.   Not much can be done about radiotherapy damage.

Off to enjoy the sun and walk the dogs now, although I'd rather be having a dip in our pool but I can do that when I get back.   For now, stay safe everyone and take care Love Carole xx

 

Highlighted
Member

Re: Darling buddies from May - moving on

Hello everyone, how are you? Nicky I am so pleased for you and it sounds like you won the lottery being allowed to have that treatment. And of course you deserve it. Someone at works wife is on a targeted therapy and having excellent results on it, fingers crossed this is the one we have been waiting for. All the different mutations, it just shows you they find out more every day. It must have been such an anxious time waiting to hear. I think there are a few drugs so I am not sure which you are on now but very pleased you are. what sort of side effects do these have, are they bad on the tummy? You know we are all so pleased for you. How long are you in hospital each time and what sort of gap between doses? Such good news 🙂

Carole I was wondering how your daughter's translation divorce case went? I am sure she will get more confident as each one finishes. As usual I am jealous of your pool as our stream just isn't the same! Is the hot weather better for your joints? What is next with your treatments. I must have confused you as I am not able to have the little ones here to look after yet.

Lisa good to hear from you. Snap, we are doing things in the garden. That's a lie I have ideas and Victor does the hard work. Not my idea, but our son wants to do weight lifting at home so they have ordered a big shed and seem to be sorting all the other sheds out to clear rubbish. I hate sheds and he has bought 2 more 😞  I am just too busy with the oldies and work that days just blur into each other. I have to do a lot of live lessons and meetings and some are fine but some are really stressful. I always stick a post it over my camera and says its gone wrong ha ha. I hate the way the screen sometimes freezes and you stare at this awful picture of someone's mouth wide open and all their teeth. Yuk. Not for me. People just keep thinking of more and more things we can do and I am just going to explode trying to get it all done. I think I am going to find it really hard to go back to work as there are so many rules and I am still worried I am going to take the virus in to the olds and kill them all. We have a nice weekend as it is our ruby wedding anniversary. We can't do the things we had planned and to have a party but we are having an outdoor distanced gathering and that's good enough for me this year. Like you I am very worried about pubs and clubs especially as son has been helping someone set theirs up so will be in the thick of it. I am much too scared to book a holiday abroad. The bit that is worrying me is the airport queues but especially the flight and then transfers where I am fairly certain we would all be squashed in as usual. Then if one of us got ill out there!!! No just not ready for it. Are any of you feeling a bit braver and planning a trip? 

Well this was a really lovely time to look at the posts. Really lovely news. Hugs all round Lily xxxx

Member

Re: Darling buddies from May - moving on

Hi all, nicky so happy to hear from you and hopefully this treatment works, wow so so pleased your oncologist has pushed for this new treatment and you got the trial drug it sounds like they are doing everything they can for you and I'm sure it's going to be a wierd few weeks waiting to see the impact of the treatment and side effects. I csnt even begin to imagine the anxiety.... Fingers and everything crossed it goes well and keep us updated. Looking forward to Doctor Lily's update on the drugs too 😊😉

Stay safe everyone, I'm still busy with garden renovations if the rain ever stops. I'll be staying indoors out of the way this weekend as I've a feeling there could be trouble locally with young ones pubbing it.... Xx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi all
After several weeks of stress trying to establish a new treatment and get it in place I have eventually started! So, a bit of background, I have had my blood checked on 2 occasions for a ‘liquid biopsy’ which shows any DNA floating around plus many other things. The test usually costs quite a lot to have done as it’s only available by private laboratories but for some reason my Trust has allowed them at the moment, the other one was done a few years back at The Marsden as preparation for a trial. Anyway both of them showed up a couple of mutations I have, one for CDK and one for PI3K. Currently CDK inhibitors such as ribociclib, palbociclib etc are only allowed as 1st line SBC treatments and PI3K inhibitors are only available on trials. My oncologist had asks all the pharma companies to allow me to have their product (whichever one they manufacture) and although he didn’t expect a positive response he did get one. So I have started on the PI3K inhibitor, alongside a hormone treatment. This took a few weeks to get the paperwork sorted during which time I was getting more anxious as I knew the current treatment wasn’t effective (another bit of information from the liquid biopsy) and I was getting more uncomfortable as my liver was suffering from lack of treatment. Anyway I started last week and we have to keep fingers crossed that the treatment is effective.

So this is the reason for not updating as I didn’t know if I’d get the treatment for definite until I literally got hold of the tablets and felt pretty rotten in the meantime, even if just the stress aspect. My oncologist has been really good getting this new drug and also being in contact with the Dr I’ve seen previously at The Marsden and running all decisions past him at the same time and engaging with my cardio-oncologist to check all the heart related issues. There are obviously SEs with this new drug, as with all, so I have to check all sorts of things and have a whole back of medications to help with them but we will see how we go.

Hope that gives you enough info, and some things to look up Lily 😉.

Hope you are all OK and doing OK in the current circumstances. Gradually easing of our lockdown but no real plans for this weekend for us, just taking it easy and avoiding all the newly opened places!
Nicky x

Highlighted
Member

buddieRe: Darling buddies from May - moving on

Evening buddies

Lily it must be an enormous change for you to work from home and it sounds an enormous challenge to look after a little one whilst you carry out your tasks. Do you set him puzzles, playdoh, Lego etc whilst you are busy. 

I understand what you mean about online planning and tuition, YD has been doing the same since start of lockdown. She is just beginning to start one to one lessons face to face. Anyway, thankfully she has still been working as not entitled to any gov help.

We've had a very hot week here, so thank goodness we are lucky to have a pool. With the very hot weather we get incredible storms too. 

This evening we ate our first homegrown produce, new potatoes and early broccoli stems.  We're battling to keep the green veg from being eaten by caterpillars laid by the white cabbage butterfly. 

Next week YD is doing her first interpretation case in court for a messy divorce so we wish her well as she will be nervous. This week she found out her business account had been hacked, thankfully today she got all her money back.

So tomorrow we're making proper net cages for our green veg to keep those damn butterflies out.

As I'm off to sleep another storm is starting so wish me luck for sleep and I wish you goodnight, and have a good weekend love Carole xx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi

Nothing to report at the moment but will do when I know, we are looking at targeted treatment in answer to your questions Lily.

Keep safe

Nicky x

Highlighted
Member

Re: Darling buddies from May - moving on

Hi everyone, I have been looking in to see if any news and then forgot to answer so sorry Carole.  No I haven't gone back to work as I put the others at such a high risk I  am allowed to be off. Feel bad not go but would feel worse if I brought the virus back to people. I am really busy doing everything from here so I can safely safe I am working 5 solid days and often evenings. I have to do online lessons too so they take a lot of planning. Not very keen at all as you never know who is watching you 😞   So many things you can get in trouble for if anyone does anything inappropriate. Nerve wracking. Only the 2 years who will take exams next June are in and they are in tiny classes or bubbles and can't talk to anyone else so not exactly normal. I hope they get something out of it. A lot of mental illness in secondary schools from being home and isolated. Some have done nothing at all and nobody at home has made them so going to be tough getting back into a routine. One of my littles is back but was only offered 2 days each week. His brother can't go at all. One daughter has to go back to work and 2 of hers allowed in school part time but one not at all. So difficult to do everything. They have been in my garden which was lovely so we see them individually more now. Getting ready for the next easing 🙂  How are things in France now? I feel like we got your warm weather as absolutely baking here so I am still catching a tan. 

Lisa are you able to walk out and about with your parents now ? I hope you are able to see more of them. Are you hoping to go away this year. I don't feel I can dare go abroad but hoping to visit some nice UK places. How about you NIcky? Are you able to fit a little trip in at all, somewhere in the UK? Any news yet about the next plan of action for you? Hoping to hear that they have a good idea of what they are going to try next and most of all that you agree with their plan. I am sure you will have been doing some research. What are  your thoughts? I wondered about a targeted therapy or immunotherapy. Are either an option for your dx? I have been thinking of you and hope you have been able to take this next blow as well as in the past and are ready to go forward. It must be tough but I know you are tougher buddy. Hugs Lily xxx

Highlighted
Member

Re: Darling buddies from May - moving on

Hi all, it's been a while since I last looked in, Nicky so sorry that your scan wasn't what you expected but hopefully, you and your Oncologist will have a plan of action.   Are you feeling ok except for this news?   I'm hoping that you are still enjoying some nice walks and visits to the family and grandson.

Lily I think you must be back at work now, it seems a bit daft to me to open up schools again so near to the summer holidays, what are your views?

Lisa nice to hear from you and it sounds like you and your brother are keeping busy, especially with the garden project.   The picture didn't seem to appear?

Things ticking over here, I wish I felt a bit better as I am so tired, and almost every day have to have a siesta, and even then finding myself nodding off in the evening.   My heart check was fine, although BP a bit high at the time which I think is just white coat syndrome.   The last blood test I had still shows a positive for an auto immune disease so I think I will have to see my dr for a referral to another centre, specifically for auto immune illness. The hospital I went to is a general hospital, but there is a specific clinic at Toulouse. I've been having physio for my hand problem which is just not helping.

Our raised bed veggies are doing well, except for our beef tomatoes.   These look pretty poorly, even though we keep feeding them.

Since the end of May our weather has been very changeable, like spring showers really but temperatures are not as warm as they should be.

Take care all and keep safe.   Well I had better get on with checking the garden, making sure no bugs like cabbage butterflies have laid their caterpillars on my curly Kale 🤣

Highlighted
Member

Re: Darling buddies from May - moving on

Hi ladies,  Nicky always glad to hear you back out there, gloves on ready to fight, using your immense knowledge to work the science. I really think they give more respect to people who ask questions and come up with ideas. It makes them make of an emotional investment in your treatment I think. I am sorry that I have totally lost track of which type of regimes and treatments you have had. I have always wondered if you had more than one type going on as they mutate, what do they say you are now? You had Herceptin, can you repeat it? I hear a lot about targeted therapy and immunotherapy and wondered whether they had explored these options fully. Someone I know through someone else has been in Addenbrooks having one and she has a really tricky dx but has been responding well. Which hormone are you on for now? There is always the option of getting on a trial to access the newest drugs in, if there is one suitable. You can often pick up a lot of information from the trials to see the way docs are thinking treatment should go next. Anyway you get your head in the internet and get reading to plan the next moves.  Always here to talk if I can help. Never on your own in this buddy. Hugs Lily xx

Lisa two posts so soon 🙂   I have a house full of paper and work too. never seem to quite get round to sorting it all out between sorting the oldies, Teams meetings and setting work. The new pup is so gorgeous, likes to wrap herself round my next like a little scarf in the afternoons to snooze. Got piranha teeth though so only when she is being cuddly. Has anyone thought about doing anything in the house during lockdown? Carole? I really want to decorate but too tricky with the fur ball trying to escape!

Must go now as a birthday weekend. They aren't quite as much fun but we will try hard. Love to all Lily xxx

Highlighted
Member

Re: Darling buddies from May - moving on

Take care nicky and let us have any update when you can xx here's hoping for some sun at the weekend xx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi

Yes it does deserve a bloody post! However I have things to investigate and treatments to sort out so will report back when I know more. So far my oncologist has been very proactive so I have changed my opinion of him since we first met last year and is doing all he can to get second opinions and informed choices. Am coping OK at present so no visits necessary, even if it were possible!
Will be in touch again

Nicky  x

Highlighted
Member

Re: Darling buddies from May - moving on

Lisa it is really nice to hear you are ok. I do worry about all of you if it is quiet. We lost a relative so its been tricky with mum, it was her sister. We watched the service together which was surprisingly lovely. We all worry about everyone don't we? I want you to get another dog please. I think you would love the company and there are so many dog care firms now when you are at work. Keep in touch.

Carole hope you are ok. Do you watch the British news to see what the latest is here? We are glued to the bulletins in case with miss hand out another thing you can do time. Almost every day. Take  care xx

Highlighted
Member

Re: Darling buddies from May - moving on

Hi Nicky,

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

Highlighted
Member

Re: Darling buddies from May - moving on

Hi all, sorry for my absence I've been utterly useless in checking in but must try harder... 

Nicky so sorry to hear your news, I hope they find anothet treatment to try for you xx must be lovely seeing family xx

Lily, a poodle how lovely. Ha all my friends keep saying same with kids their lives revolve around food!!

Carole, hope pool warms up soon and you can get in too... Oh too early in morning for me to read the pooches food regime.

Nothing much to report here, I'm okay, doing better had anxiety at first but it's because working loads hours, my boss left and majority of work was covid stuff and lots still is so was working it, news, chats so it's been hectic... Been doing food shops for me and parents too, hate that and hating all these protests and wondering if lockdown will come back. My fear is parents as we all do I think, dad could be going back to work st hospital which worries me as overweight, over 70, diabetic, legionaires disease and got 2 heart scans tomorrow... Working as a porter at hospital will worry me. But on plus side my jewellery room is converted into office, and brother has been working on my garden which has been a massive project and run out of my holiday funds. This is a wee pic of a little space at side of house I wasn't doing but then had idea and for 100 quid not bad and upcycled old furniture I was sending to skip... 

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi all

Unfortunately the latest chemo has not done what it was meant to which is why I've been absent for a while - getting scan reports and checking out what happens next.  so, at present I am back onto hormonal treatment and will see how things go.  Obviously not what I wanted to hear but not unexpected as once you've been on as many treatment lines as I have they do become less effective.  So, we soldier on!

On separate things I have been able to visit my Mum which, after some 14 weeks or so (I's stopped going once I started on chemo in early March) that has been nice, and good for her mental health as she has struggled with anxiety on and off for the past few weeks.  A couple of visits where we have sat in the garden and had a cup of tea, all appropriately distanced of course. Plus the girls have both visited and we all (well, 4 of us) went there over the weekend for a picnic and a chat for a couple of hours, again some form of normality for her.  We have been out for walks with grandson and odd members of their household but at least can all meet up if we want to in the garden or at the park without recriminations.  We have got used to sitting and walking apart!

Other than that nothing interesting!

Oops

theres my Tesco delivery, must dash.

Nicky xx

Highlighted
Member

Re: Darling buddies from May - moving on

Hello everyone, especially sorry Carole you must have wondered where I disappeared to! I think I am a bit more pouches of food and dry biscuit for dogs as I could not face your feeding regime. I think you must be right on the end of adventurous! I can't even think about ordering things like that especially to make the chicks be killed 😞   Ha ha my poor dogs would be on cheese sandwiches before I could even have that in the house. I do understand the health reasons and just not for me, especially in my kitchen equipment lol.  She does have pouches with vegetables in though and she is teething on cold carrots from the fridge. Her little face was an absolute picture the first time she saw one. She is doing very well on the pouches. It was just too worrying with her struggling to swallow the stuff and then completely black poos which means bleeding in a person. 

Nicky any news yet from your latest results? I remember you were going to a different hospital and hope that it feels safer to be away from the main hospital and associated dangers. I hope the chemo has done its job and that the ct results were encouraging. Its been a bit quiet which always worries me. Quiet from Lia too./ I hope you are ok and the family too. Nick have you manged to see your mum yet? I know you were wondering quite what to do. Well after their sister died mum has got very anxious to see her brother who is shielded. Anyway last week when he was allow to go out at last I managed to get the 2 to see each other for half an hour and mum is so pleased it was worth the effort and me opening every door between his and her home, etc. 

I am very much enjoying the family and gc being allowed to visit the garden but very annoying when it rains! They are very keen to see the puppy of course but ours is like their second home and they have missed the contact and running up and down our long garden, wrecking my plants ha ha. Well ttfn or I will never get round to posting

Hope all is well. Love Lily xxx

Highlighted
Member

Re: Darling buddies from May - moving on

Evening Buddies

I see that 6 members of a family can now meet with social distancing so hoping Lily and Nicky can at last see their children and grand children?

Lily our dogs have been raw fed for over a year now, they love it.   I order from a frozen food supplier and collect once a month.   We did buy a second hand freezer to keep their food in.   A raw food diet mainly consists (for ours) protein mince, offal in liver, another secreting organ which is usually a bit of kidney, bone as in duck necks (it can be quite scary at first to hear them crunching away, but it's excellent for their teeth, and as long as bones aren't cooked, no problems). Sometimes when we can get them they also have quails, usually sawed in half as one whole one is too much, sometimes tongue, sometimes brain.   It just depends on what I can get.   They also have a frozen sardine each day (Aero won't eat them if thawed) this is for their omega 3.  The amount they have each meal (x 2) depends upon the dogs weight.       As a treat when they go to bed at night they also have a day old chick, complete with organs etc.   Sorry if too much information.  For your poodle, if you have a whizzer/liquidiser you could put all the food in and whizz it down to liquid.   I do this when I make them a bone broth, all the bones of a cooked chicken, but slow cooked and liquidised to form a paste which sets and ours absolutely love it.   You could try all the different ingredients blended down until she is able to eat bigger bits.   Bones need to be crunched for the teeth cleaning.Hope that helps but don't hesitate to ask if you have questions.  It can be a bit of a hassle, but I wouldn't go back to "ordinary" dog food now. Ours also eat a variety of veg and fruit.   Congratulations on your new addition. It will probably be a while before she gets used to it. Sorry to hear you still have some family problems.   I speak to my Mum every couple of days via whats app, which is good as I can show her around our home and garden, and all the pets.   Our veg plants are doing really well and we've had to take the polytunnel down now as temperature is just too hot at nearly 30 degrees for the last week.

The pool is up and running but at the moment only the dogs are swimming, it is still a bit too chilly for us.   I will post a photo of Aero in the pool.

As for what we can now do/not do, we can go out freely without filling in any forms but are only allowed to travel within a 100 km distance.   We have to wear masks in shops and other places.   Restaurants and cafes will open next week but with a limited number of people and social distancing applies.

Mr P returns to work next Wednesday which seems to be ok for the moment.

Nicky you must be relaxed about seeing your girls soon, although being in the ultra vulnerable group do you have to hold back for a bit longer? Has your tummy eased up a bit?   I remember taking ginger, and also peppermint in water to help digestion.

Lisa, where are you and how are you?

So that's it from me for now, weather is gorgeous at the moment, in fact a bit too hot.

Take care and stay safe, Love Carole xxx

 

 

 

Highlighted
Member

Re: Darling buddies from May - moving on

Hello buddies, how are you getting on? I can't decide if I am getting used to this or if its getting worse. I think being really busy probably help a lot. Son is back at work so I can attempt to eat less times a day now. Did I tell you we have new puppy? She has been here a week now and is just such a sweet little pup. She is a poodle and we got her at 8 weeks old. She has not had any accidents in the house, which I am amazed at. Our oldy is vaguely interested but mostly sits on anything that's too high for the pup to reach her. She tends to pretend pup doesn't exist and then when she decides she wants to play, she gives such a loud woof and leap that the pup is petrified and runs for the nearest cover. The puppy is really small and we have gaps at the ide of just about every piece of furniture in the house, that we hadn't actually noticed until she tried to explore. She had been brought up on raw food. Carole what do your dogs eat? Raw food is very in over here for dogs and fans of it think nothing else will do. They even eat bone in it. We brought home 2 weeks of food from the breeder and they said she did not eat very much so we have been worried in case she went down hill. The raw food was just huge lumps and the pup only has those sharp piranha teeth with no chewing ones yet. So she was spending ages trying to just get through it and then giving up or just playing. So we have moved her to pouches of food which are part raw I think and have veg in too but most of all it is softer and not huge lumps of gristly bits. So she loves this and is eating a lot more now :). She is officially our son's dog so he is getting the early morning rushes to go in the garden. Perfect, enjoy  puppy but have no night disturbances.

Nicky I know what you mean about the virus. I have one oldie who is shielded and they told me he is right at the top of that group. I have a special code for him and have to give online updates on his health to the NHS. They wanted it every day which I was not going to do, as I don't even see him every day. He misses going out as he has no idea what the virus is and can't remember anything so blissfully happy at least with no worries. Mum is in the old group being 90 next year but is not shielded. She can't get out anyway so might as well be in that group. She understands it all so its playing on her mind and making her depressed and often very moody. Usually comes my way. Then my bil had an accident and can't use his right hand. I had to leave him at a and e as nobody can go in with you, except if children then one goes in. We have taken him 3 times and go again later this week. So all our distancing slipped with him as I found I couldn't drive with a mask on, thought I was going to pass out. He lives alone and has not been anywhere at all, so he is like a shielded person but need not be either. It gets so complicated but he can't drive with one hand and you can't go in a taxi or on the bus. So I am shopping for 4 households again, takes me hours to sort them all out and deliver it all. I don't mind but I must go out more than anyone I know as I try to avoid going straight from one to the other to reduce risk. How are your hands from all the washing? I have been using a thick hand cream day and night and so far they are ok. I have been asked if I will go back to school to teach. What a dilemma. I feel if doctors and nurses go then why not me, except we will have no ppe at all in school. I get paid so I should work like everyone else has to. I want to help the kids taking exams next summer. However I will get a lot of contacts. My oldies won't survive if I take it to them. Victor is worried he will not do well due to being  oldish and male plus he has asthma. So I don't know what to do at the moment but I have a little longer to decide. Any advice? None of my girls are sending their youngest in as they each have one of the first called to go back. The youngest who would have sent one of hers has only been offered a single day each week and its not really worth the risk as  his brother isn't allowed to go. The other 2 would have maybe gone in have been told its 4 full days and you have to go to every one and that has spooked them. So nobody here is feeling confident to send them and they can only play with children they are told so they don't think they will be happy. 

Carole how do things look over there? I wondered what types of businesses and shops are open now? Are you finding it ok to get everything you need? I can't remember when I last bought diesel as I drive so much less these days! How are the veg coming on? Everyone here has gone baking and gardening crazy it seems. For week it has been difficult to even buy flour, such is the demand.

Nicky I do feel for you as good days are so important when chemo cuts into your weeks. Glad to hear you are finding some isolated walks but I expect that is getting harder as people can go out for longer. We know someone who is 83 and has lung cancer and caught cv19 and pulled through and came out of hospital. Amazing and I don't know why we can't hear more stories like that to give people more hope. What did you decide to do about visiting your mum or not? Mine would have just wilted and died if we had not seen her so it was an easier choice. She refuses to eat if unhappy. A much easier decision with someone who is already at the end of their life but for you, its risking so much more. I do feel for you. Have you had the CT scan now? Keep me posted what the latest results are when you get them. Fingers crossed this chemo has been doing its thing and making a difference. Sorry to hear it gives you tummy trouble, do you have any medication to help it? I once had those terrible tummy cramps and was given buscopan which also had something to stop cramps and it was really very good at taking the cramps away completely. It reminds me a bit of when I was on the cmf part of my treatment and I could not eat any fruit or veg at all, not even a single cherry tomato. Have you tried just taking all fibre out your diet and having a carbs and protein few says around the treatment? I found eggs were really helpful too. Couldn't eat even a slice of apple until I came off it.  Might be worth trying. I hope it is going well because you would put up with anything for a good result, I know. Lisa just wondering how you are if you get a second to reply. I have been thinking about you as there were a lot of cases in the north, hope all is well. Love to all Lily xxx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi ladies

Yes, this self isolating does drag on and on doesn’t it?
When I was told at the beginning about being one of the extremely vulnerable group and I had to shield for 12 weeks it sounded so bad. However as soon as everyone had to self isolate it didn’t seem such a long time and everyone was in the same boat, other than not really being able to go out of the house. We haven’t stuck to that as we have been having very self isolating walks! So the only thing we have been doing different to the general population is not going to any shops. So, what happens next? That’s when life will get difficult for us as everyone else is able to do more and I’m sure the government doesn’t yet have a plan about the shielded group . There will be such an uproar, there is already with the over 70s in newspapers and other articles, so we will have to hope we are not forgotten about. In reality this is the group that need the protection of absolute shopping times etc whereas for most of the rest of the population the risk is very low, I think there have been only about 500 deaths in total for all under 45s. Something that can happen with any virus or illness where someone reacts unusually to it and it’s more severe than expected. I expect you will be nervous about going back Lily due to the contact that may happen and, hate to say it, the age group you are in plus as you’ve said the increased risk of taking it home to the very vulnerable group you currently look after. What a dilemma. 
I haven’t seen my Mum in person since the start of March when I began chemo and before the lockdown started. Of course there would be absolute minimum risk now as she hasnt been anywhere and gets food etc delivered to her by volunteers and neighbours who have been great. I will have to decide if I should as we are now allowed to travel out for other than essential journeys. My problem comes with what would happen if my car broke down as she lives about 20 mins away. So we will see. She has had quite a few ups and downs mentally as the isolation is tough. We all chat with her as a family daily or on extra FaceTime calls but it’s not quite the same. She is realistic about what she needs to do and now walks a bit further than she did, just to get a change of scenery but doesn’t want to go in any shops. What a strange time we are living in.

I am due my next treatment next week so have some time away from the hospitals in between, however this week I have a CT but it’s at a different, private hospital which is away from the coronavirus threat of the main one. In fact it’s just down the road from where we live as there’s been a private hospital there for many years on the site of a previous cottage hospital. So not too far to go.

The chemo has been OK but really bad with your stomach so I’ve suffered lots of aches and cramps.  Not very pleasant.

Anyway, enjoy this weeks sun, it’s looking good.

Nicky xx

Highlighted
Member

Re: Darling buddies from May - moving on

Hello everyone, how are you getting on? I know a lot of people find the mental aspect of the isolation from family and friends most difficult. We can go out for longer but now I have so much work I don't have so much time. Typical! My son would have loved to go fishing on his own and of he couldn't but now he could and he is back at work. He was not very impressed to be sent to right down to the south coast in a town location in case he got a lot of people coming to see what he was doing. As it happens they didn't but it was a long journey each day and back as you can't stay there. Quite a good journey time though. Victor is working at home as usual, nothing different there, still starting work at 5am!! He just uses zoom instead of the once a week trip into London and stays home all week. I am really busy as people think of more and more and more things they could get a teacher to do. I am already trying really hard to say extra chatty things on all the work, send feedback to every student for every piece of work  and email my tutor group every day and reply to every single person who emails me. So when we all get extra things to do it gets a bit of a heavy load and I find myself working parts of Saturday and Sunday. I like doing it as I know how tough it is for some of the families trying to teach and do a job or for those whose pay or business just got trashed and I try to make what I send easy to understand and encourage them. Its a tough time for everyone that is for sure. Now we have a return to school on the horizon and that is really tricky because it increases my contacts hugely and then I could take cv home and also to mum 😞   . Waiting to see what I get asked/ordered to do - I don't know which it will be. On a brighter note the weather has got a little warmer again although it seems I see the sun, decide to wear shorts and then it clouds over. I am soon coming up to missing my 2nd holiday 😞   . Have any of you booked anything? I don't see the point at the moment having had 2 holidays cancelled and only one is refunding our money. The other we have to go at a later date or lose our money, so we popped it over to next year. It seemed safer. I hope you managed to get your treatment Nicky and that the jabs are working well to help your counts go up. We have a funeral next week, surprisingly quick really but I think I told you we cannot go. Mum is upset that they won't let her send flowers. I don't understand why they won't let her, but immediate family say she only wanted one and it will be theirs naturally.  Sometimes you wonder why things have to be difficult.

Anyway Carole it was lovely to hear from you. I have no idea how to get photos on here and won't try so thank you for being good on the tech side. I feel great empathy with you on the mums. They are so feisty but I think that is why they got through all the hurdles in life along with some good luck. Mine is pretty much 100% upstairs and knows and tells me everything she can't do, which is not easy either. Especially if you are one of the only people going in - prime target. Although somebody has been singing my praises as she has been saying she is sorry I have to do so much. This is new! Today I got up at 7 and got home at 11 after shopping for 4 households and then staying with mum for a bit and sorting her bills and payments to her many people she employs. I am glad to hear your confinement is over Carole. Does that mean you can go anywhere? I haven't heard what your current rules are. The whole news here is taken up by the million questions, ideas, rules and queries everyone has in the UK, with different ones for England now. Its a lot to take in and I just hope that people stick to it so we can get closer to normality. Anyway hope this finds you all ok and managing love Lily xxx

Highlighted
Member

Re: Darling buddies from May - moving on

I'm pleased you enjoyed the photos Lily, how are you and your family doing?

I'm sorry your Mum is suffering a bit. My mum keeps saying she can't go out as they have to stay in. Now she hasn't been outside since the day she arrived. Where is the logic in that?. I think in her mind she remembers the shops she used to walk to more than 3 years ago, but forgets she can't do that now as she's too fragile and doesn't live near any shops now. Dementia is so sad, but today she mentioned how you never forget your babies when they were born.

So it's all same here, our confinement has finished and in the supermarkets things are back to normal.  I had to mention to two people on Saturday to "respecter le distance " as they came too near to me for distance".

So, it remains for me to say how much I hope you're all doing well. Love Carole xxx

Highlighted
Member

Re: Darling buddies from May - moving on

Hi everyone how are you?

Carole I loved the bird photos thank you. Not sure I have ever seen one of them so possibly native to France. Thank you I think I have mum over the worst now but she is finding being told she cannot send flowers disappointing when she cannot go herself due to restricted numbers as well as her lack of mobility of course. I didn't think it would hurt to let her as there will only be one flower arrangement. She is a bit low so I am glad it is not raining as that gets her on the best of days!  I hope the time passes quickly until you get someone back in the house. Everyone over is crazy home baking, could you plan something nice to freeze? I am sure homemade diabetic food is much better than bought items.  Take care x

Lisa how are you getting on? I hope everyone has stayed well and safe.

Nicky yes thank you, I needed to let off steam that's for sure 🙂   I found him fighting off an ant attack today with cloths stuffed in every hole he thought they might come out of. He had also taken 3 days of tablets and was rather excitable ha ha. We are managing ok with family all helping and actually the place is so much cleaner. So what were they doing? How are  things progressing with your inlaws? Are you able to set a funeral date yet? Its so much harder when you can't go through that stage and feel in limbo. Since then I have heard of another couple who went like that 2 weeks apart and they have said a broken heart. Sad but quite special too. My aunt's is in just over a week so they were fortunate to find room so soon, as you say only 10 allowed and one is the vicar so 9 relatives and none of us can go as it is a large family. In a way it make sit easier being told none of us can go, rather than go through guilt/worry about contacts. Have you need able to have chemo yet? I hope you have been able to get the next one in and that the injections worked to boost your system. Do you think you will have to have them each time now? I  believe many of them you can do yourself if you feel up to it. 

I have been quite happy working at home as it has meant I am near for any of the calamities my folks get themselves in from time to time. I feel quite anxious about news about teachers going back but the unions are involved now which will probably settle things or stop them. I do want to be back to work and help the kids but I am going to get so many contacts I fear I will start my own epidemic amongst my nearest and dearest. I wait to see what happens. Hope you are all well love Lily xxx

 

Highlighted
Member

Re: Darling buddies from May - moving on

I'm so sorry it's been a while since my last post, where does the time go?  

Nicky you've been having a rough time, what with in laws, funerals to be arranged, and postponing your 2 chemos. Will you ever find out if it was Covid 19 that caused the death of FIL?   It has been reported that broken heart syndrome is a definite cause of some deaths, strangely it happens to women more than men. If ever there was a bad time to die it must be at the current time.

Lily I'm sorry to hear about your Aunt, and the situation with your Uncle must be an enormous worry for you, being the primary carer.

We are still in lockdown, although I have noticed that there seem to be more shops open than before.   I find this quite worrying, how can normal life ever resume?  I always wear a mask when I go out, only a home made one but better than nothing. I also carry a small bucket, water and soap to wash my hands after every shop.

I am desperate for a hair cut, how about you ladies?   Mr P left for work yesterday, a long journey for him as the only way he could go was via Calais/Dover.  So a 10 hour drive this side, and then a 2 hour drive UK side.  Hopefully by the time he returns there will be an easier way for him.   So, after such a long time his absence has hit me quite hard.   Never mind, it's only 2 weeks.

I personally don't know anyone who has, or had Covid. ED who works in a Care Home has had some deaths. I'm quite worried about her as she is "frontline".   Our Son and SIL have both been furlowed.  Our region in France had a panic a couple of days ago when the government published a latest map showing our area as being in the red.   In fact the figures were wrong and we are in green which is good. Phew. Boy did they have to apologise for the error.

To end I'm adding a couple of bird photos.   A woodpecker and a hoopee, both are one of a pair that we see every day in our garden.   On that note, take care and stay safe.

 

HoopeeHoopee

 

woodpecker and a titwoodpecker and a tit

 

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi Lily

As you know this is the place to let off steam for whatever reason. Things you can’t say to others or just don’t want to burden them so keep doing it if it helps.

As you say what a dreadful situation your uncle has been left in, hardly understanding of his condition and state of mind is it? Despite the fact he must have been on the adult services radar of his local council if he previously had carers assigned to him. What a strain on you. No wonder you are fuming.

Sorry to hear about your aunt. It really does seem to bulldoze it’s way through care homes doesn’t it. Having said that anyone of a greater age has a reduced immune system and most have at least one underlying condition which is when the virus is so deadly.

We still have the long drawn out saga of parents in law which is why there’s been no update from me. Post mortem on FIL was done about 10 days ago but still no death certificate ordered, I think the GP has to do that after a medical certificate is produced. Then MIL also had to have a post motel which only happened this week. FIL did have COVID 19 but I’m not sure he died of it or with it. MIL was, as expected, coronary heart disease with further lung issues so it sounds like the died of a broken heart probably did apply to her. With any luck both death certificates will be issued next week so a funeral can be arranged, only a month or more after their deaths. No wonder the government has had problems reporting the number of deaths in care homes. So we are in limbo land again. It seems the individual local authority decides on the number of people allowed to attend a funeral so we have yet to find out how many but it seems capped at 10. All distanced 2m outside, no inside ceremony so if you were to go to your aunts, Lily, you would drive there on your own and stand outside at least 2m away from everyone else so it would be unlikely you would be exposed to anything.

As to my treatment I have had 2 delays due to low bloods. The hospital and oncology team has been really good even getting a delivery from pharmacy to me by car (an injection to boost my blood counts) within24 hours so I didn’t need to go back to the hospital to pick it up. I only go for blood tests, the department is absolutely deserted, and that’s it everything else is by phone and chemo unit is now isolated in a private hospital.

Hope you are all keeping safe. Chin up chickens

Nicky xx

Highlighted
Member

Re: Darling buddies from May - moving on

Hello everyone, I hope this finds you all ok. I am sorry I haven't been on here sooner, my days all seem to blurring together. I like to do the Thursday clap and then missed it this week because I hadn't remembered it was Thursday, so annoyed with myself.  I can hardly believe it has been over a month with just us in the house almost 24/7. We have had a lot of construction going on in the garden to keep s busy. He has no work as he is furloughed so we kept thinking up projects to keep him busy. He has been running for miles or cycling in his exercise time to try to get rid of some of his energy. Reminds me of the gs who have to run off their energy! It seems tougher to be at home with nothing workwise to do than being really busy like Victor and I are. I have never had so many meals and snacks each day in my life, so unlikely my work trousers will do up when I go back. Still they break up the day and we all sit and have them together, in the garden until this rain turned up. I know its good for the garden but I preferred it hot. This week my Aunty died, she was in a care home and had been in bad health for some time so it was not a shock but it was as she had got better after the same thing so many times. I had to drive over to tell mum the next day as I didn't want to hear the news at night and then be alone. It was a shock and she was fine, then very odd and then tearful much later. As you unfortunately know too Nick, funerals are very difficult at the moment. I know so many people now who have lost oldies, its wiping a generation out 😞  So we don't know if we can go. I am hesitant as her siblings cannot go out the house, let alone to a gathering. If I represent them, then am I risking bringing something back. In a way it will be easier if I am told there is not enough room for me to go, especially as there will be several people there who are working in a covid area of a hospital. Does it sound mean to not take the risk? So I join the many who have lost people.

Nicky how were the arrangements made for your inlaws? Have they been able to arrange services? Its a difficult time anyway, but so much harder at the moment. Mum has been keeping me very busy, so its trying to juggle online work with her. I now have a code for my uncle as he is shielded and I have to input information about him to the NHS every week. Its bizarre but he is the highest level risk, even though he doesn't know it and keeps knocking on people's doors! Mum would fall apart if he went too. I have been so mad with people on the tv talking about the charities helping people. I am really really glad they are of course but why did all his have to pack up and go home? I still don't understand how they can tell someone of the highest risk category  that they will be back in June. I have had numerous phone calls from people and volunteers to check on him. Most of them tell me he can go on a website where there is lots of information. Information cannot feed you, bath you or sit and talk to you. He has never owned a mobile or a computer. He can't cook for himself and they can drop food 2 metres from the door to cook for himself. They can't ask what he would like so they send coffee when he only drinks tea. They ask me questions about if he is self distancing and if he knows what the virus is and then get all flustered when I say no he has dementia. They ask me if he can fill a health form in every day or if I can do it every day. The dr asks me to monitor him when he goes blue and tells me I need to sit there and monitor him, when she is 400 metres away and is the one with the medical knowledge. I just don't get how all of these organisations and all the volunteers and everything so wonderful people are doing, but his all go home, because of the risk of working. Sorry I will shut up now but I am start to lose my rag with people asking me questions and not doing anything. He deserves so much more.

Nicky have you been able to have the next dose? I have lost track of days to know if you have  been or will be recovering from the s/e at the moment. I hope it all went smoothly as possible and you didn't feel at risk of contacts during the time out.  Keep me posted about how you are doing. Its so difficult for all of us to not see people too. ED brought us a cake as a present today and the littles were in the care. He was beaming away and I was glad he still recognised me. I managedto throw some sweets through the window without getting too close and gd was very excited. Ed is very germ conscious so we will see if it survives her antibac cleaning. I think she cleans all of her shopping. The family all seem to react in different ways so some will shout from the road and others are totally hidden away. We all go on houseparty and are having family bakeoffs and most recently a drawing competition where everyone had to draw something. They are very arty so I was embarrassed by my terrible attempt and their kind comments lol. The gc are all so busy nd their schools have been phoning every week and dropping off their work for the tinies. Its so hard for ones who have not been at school long or who are changing schools in September and missing all the lovely end of school events like trips away. Teachers have been sending them videos to keep in touch. Eldest gs wishes they wouldn't as he is totally swamped with work. He is expected to do well academically so he is really getting a lot. I don't think he quite comprehends that if he does everything, he automatically gets sent even more each week, as they can never have nothing to do. He is conscientious and doesn't like to leave anything! Have nay of you been trying something new? I know a few people have decided to learn a language or to play an instrument. I learnt piano but have not played for years. Might have a try this week. What are all your hobbies when youget time for them? 

Well I will buzz off as I feel like I sent an angry post so I am sorry and I m in admiration of those many people out there who are helping. Bless them. Love Lily xx

Highlighted
Community Champion

Re: Darling buddies from May - moving on

Hi

btw it seems to be this thread that is upside down! Maybe this whole section of the forum as well? When I post on the secondaries part it’s all in the right order. Typical that this is probably the longest thread on the forum and we have to try to get to the last post to read it. Or we could just write any random comments by just replying to the 1st one, without reading the last post that was done ha ha.

Anyway I’ve decided to amend my government guidance/registration form to say I can’t get help as I think it takes a couple of weeks or more to get my details updated at the supermarkets by which time I may not have any shoppers about to help me, or only help me once a week, that’s if nurseries and certain workers start going back. So I am forward planning rather than taking advantage of it right now. With YD at her sisters she does have time to do it at the moment so I will continue to use her, and see her for a chat when she drops it off. She doesn’t like taking the boy toddler shopping for the same reason as you pointed out Lily with a little one so she can only go when she’s not on childminding duty . 
As to Mum she seems to have a minor UTI, or that’s what she thinks and the Dr has prescribed a short course of antibiotics for. She has also had a chat with a GP about depression so she is on their radar. I think because she is so mobile and ‘with it’ it’s affecting her because in normal times she would still be out and about doing her exercise classes and bowls etc. If she was normally housebound it wouldn’t be much different other than people not visiting so she really has lost her freedom and social contact. She seemed more cheerful yesterday. Unfortunately, although my brothers could visit they are both between 1 and a half or 3 and a half hours away, so not local at all! Hence why it is me that is the point of contact and I’m still 30mins away (always have been) so there’s no relatives able to visit at all. She does have local volunteers and neighbours but of course they just put things on the doormat and run away! So hardly a conversation to be had anywhere.

My chemo is doable, although this last time I had awful stomach cramps for a day or so which freaked me out, until I read that this does seem to be one of those less known side effects that they never warn you about! They stopped after a day or so but, boy, were they painful and of course not good when you’re still trying to sleep after coming off the steroid days! I have remembered that mushrooms seem to be a boost for wbc so I’ll eat a few more of those plus a few years back I did buy an supplement that I’d been told about (from various knowledgeable sources) so I may have a couple of them as a quick boost as well. Fingers crossed it goes ahead next week.

Carole, I can imagine that you are not looking forward to Mr P going back to work, especially as he’s been there for so long. You must be used to his company this time whereas I expect you are normally only expecting him there for a set number of days so have your own routine. A tough time for everyone. Good to hear you are becoming market gardeners though ha ha. Well done you, just a few chickens and a pig and you can become Tom and Barbara. 
Take care all, Lisa, let us know how you and your folks are coping. Hoping everyone is keeping safe and well.

Nicky x