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January 2019 chemo starters

505 REPLIES 505
LB
Member

Re: January 2019 chemo starters

Thankyou Kip i’m Going to try some of that 🤗

Kip
Member

Re: January 2019 chemo starters

Hello Jan ladies... sorry to hear some of you are suffering and having hospital sleep overs.   I had one too during the first round of T.   I can see some of you are struggling with mouth issues.. the biggest yuck ever!   I had oral thrush and had flucozonale every cycle after and started it as soon as I got a minute tingle in the mouth.. definately helped it from getting to bad.   My mouth was thick white and coated and felt like lard... blurgh..   I found lime cordial cut through a bit and didn't taste too bad, tonic water helped.  I was also bought some teas (fruit flavours) from Whitards.  They come in  tub (bit like a hot chocolate) and you just add hot water...I found I could taste those and they were quite soothing on a sore mouth.. I'll see if I can upload a photo... anything worth a try hey.

Take care all

Kip

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Member

Re: January 2019 chemo starters

... and i’m out!

 

Thank you all for your kind words. This admission was particularly unpleasant as they put me in a bay with some very sick people. I think I’ve seen and heard enough to last me a lifetime... 

 

Hopefully they can come up with a plan for the next cycle as I really don’t fancy ending up with neutropenic sepsis for a third time! Aghhhh 

 

Hope everyone is doing well this week 👍😀

 

LB
Member

Re: January 2019 chemo starters

Hi MaMaJuJu

a scarf around the mouth and nose - I am going to do that 😊 I think I picked up this cough from someone behind me in a queue - she coughed and sneezed and my hubby practically picked me up by the shoulders and put me in front of him 😂😂😂😂 

hugs to all 🤗xxx

Member

Re: January 2019 chemo starters

Hi There,

 

@Sunnydaze, thanks for the info on the oils. I have done just that and hoping for the best. I am really looking forward to my hair growing back in. I am not that far away from that happening 😀.

 

@LB, thanks for the info on the nails, I will keep mine on for the duration although I will need to take it off and re-apply. Also, sorry to hear you were in hospital but glad to hear that the news was positive. Wishing you a speedy recovery. You do get really paranoid about infection. If I am in a shop I tend to walk about with a scarf round my nose and mouth.

I have been the same with food, the food that I tolerated during the EC cycles I don’t even want to touch now. Not sure if it is a reminder of how awful I felt. 

 

@Sparkie2001, I hope the neutrophils are increasing and wishing you a speedy recover. 

 

Nite nite everyone, will be back in touch soon.

 

xxxx

LB
Member

Re: January 2019 chemo starters

I’m just back from a morning at the hospital 🏥 I coughed all night and rang the emergency chemo number this morning. I was worried 😟 as we all are about infection ☹️ I had a full MOT of bloods, temperature, ECG  and blood pressure. Luckily all okay. Found out I have a calcium deficiency which they’re going to give me supplements for. Sadly other patients not so lucky and had sepsis so although it seemed an overreaction it wasn’t. 

A whole new world 🥴 

hugs to all keep well 

LB xxx🤗

Member

Re: January 2019 chemo starters

Thanks LB - i’ll dig out some nail varnish in time for T. I’m afraid i’m very squeamish about nails at the best of times so the thought of them going wrong fills me with dread. I’m also struggling to find anything nice to drink at the moment. Who’d have thought water could taste so uniquely vile! Roll on mouth revival time. 

 

DiKat - yes they’re jabbing me on a daily basis with filigrastin so with a bit of luck my body will stop fighting it and take the hint soon. I thought I may get away with it this cycle as they let me have the slow release jab the day after chemo but it just hasn’t worked🤭

 

LB
Member

Re: January 2019 chemo starters

Hi MaMaJuJu

regarding the dark nail varnish- I had this chat with my nurse at my chemo on Tuesday- she said to keep it on all the time and even to go onto the sides and cuticles to keep them protected. She told me about twins who were diagnosed and treated at the same time. 1 twin was treated in Scotland and the other in London. The one in London was told about nail varnish the other wasn’t. The one who had the nail varnish kept her nails but her twin didn’t do so well. 

I’m day 4 of FECx4 and feel awful - I am not finding much to help my horrible mouth - tea and coffee and water -uuuurrghh ! Things I found worked before I can’t stand the thought of now ☹️ I know I’ll feel better next week but fed up in the meantime 🥴 

hugs to you all going through this too 🤗🤗🤗

Member

Re: January 2019 chemo starters

Sparkie2001 Oh no shame about the neutrophils. Are you having more Filgrastim injections?

On the taste front, mine is like an overly salty slimy like feeling. Sweet things taste too sweet too. Like Sunnydaze says though, not nice but manageable. I’ve got some Elderflower cordial which I have with plain fizzy water, that seems to cut through it a little.

Fingers crossed you escape soon! Xx

Member

Re: January 2019 chemo starters

Thanks Sunnydaze 👍

 

Right, bring on the T! I am almost looking forward to changing drugs and getting this hideous FEC bit over and done with. 

 

Alas my neutrophils have decided to drop even further today so no escape for me. Aghhhhhh. X 

Member

Re: January 2019 chemo starters

Hi Sparkie

I ended up with thrush in my mouth. A white furry tongue, 3 days into T. Yuck. I was given Fluconazole and it has worked quickly, but my Onc told me thrush with chemo can  be a recurring problem. Some food just  now is a bit bland and tasteless. Not great but doable. I can live with it, as long as it does not get worse.

Member

Re: January 2019 chemo starters

Thanks Dikat and Sunnydaze! I think I would much rather try my luck with some joint pain and fatigue instead of the FEC nastiness Smiley Happy

 

Can I ask how odd are the taste changes please? I have been getting a very manky mouth so far - it’s almost like the roof of my mouth changes texture and tea tastes absolutely disgusting. Has anything worked to try and counteract it a bit? 

 

Fingers crossed my neutrophils will get their act together shortly so I can hot foot it out of here. I do hate hospitals. Yuck. 

 

 

 

 

 

Member

Re: January 2019 chemo starters

Hi sparkie2001

Im from Dec thread. Just wanted to let you know, I really wasn’t good with FEC. Neutropenic sepsis after first cycle and neutropenic (but no infection) after 3rd cycle along with many other side effects. I had my first tax 17 days ago and although I have experienced lots of side effects with that too, I have found it better than FEC so far! Like you say, none of the spaced out freakiness which I hated. So fingers crossed things will be better for you. Hope you feel better and get out of hospital soon x

Member

Re: January 2019 chemo starters

Hi Mamma Ju Ju,

I’m not very scientific I’m afraid and just shake a couple or so of drops of rosemary oil into a small amount of almond oil, rub it in and hope for the best😂

I am also suffering from a bloated and distended tummy. I think it’s extra sensitive for me because of my scar from my recent Diep surgery.

Sunnydaze xx

Member

Re: January 2019 chemo starters

Hi Sparkie,

Welcome back  to the chemo club 🤣It’s  just as s*** as ever it was, we’re still  ploughing  through the crap each day. It sounds like you are too and I’m sorry to hear you’re back in Casa NHS ☹️. Harrumph! I hope everything settles down soon for you . So unlucky to be neutropenic twice. You deserve a bit of luck.

Talking about Docetaxel, it definitely is better than FEC for me, definitely less spaced out and no nausea, mainly joint pain, taste changes and fatigue.

Hope you’re home again soon.

Sunnydaze xx

 

Member

Re: January 2019 chemo starters

Hello all

 

I’m back! Finally got the all clear to start chemo again last week so am now over a month behind schedule and thoroughly fed up. To make things even more complicated I’m back at Casa NHS with neutropenia again! Aghhhhhh. I do not think I am very good at this chemo lark. 

 

Sounds like everyone is making good progress tho. Am v interested to see how people are getting on with the docetaxel and hoping it’ll bring less of the spaced out freakiness than FEC. 

 

Smiley Sad

 

 

Member

Re: January 2019 chemo starters

Good Afternoon All,

 

I hope everyone is doing as well as expected.

 

So I had cycle number 4 last Friday. I have been given Abraxane which is part of the Taxol family so similar side effects.

 

The side effects kicked in on Day 2. Fluey feelings with achey joints and muscles. I have also had bad pains in my stomach too which isn’t pleasant. I do think this is because I have a very sensitive stomach. The achey joints and muscle pain is starting to get a bit better but stomach is still sore and feels bloated.....almost as if there is trapped wind. I spoke to the breast care Nurse this afternoon and she has advised that if it is not better by next week then I have to call the cancer line. Fingers crossed it is. 

 

I have a couple of questions to ask.

 

1) @Sunnydaze, how much almond oil and rosemary oil do you use for your scalp. 100ml almond oil along with a couple of drops of rosemary essential oil?

 

2) I have been wearing the dark nail polish but I was wondering how long you keep it on for? Is it through all cycles of Taxol or just while getting the treatment and a couple of days after? 

 

Any help would be greatly appreciated.

 

Thinking if you all and sending you lots of love xxx

LB2
Member

Re: January 2019 chemo starters

Yes Sunnydaze I am on 7 Filgrastim injections and do have pain from them, mainly in my back. I think I was getting that kick in just as the docetaxol pain was easing. 

 

Good on you for getting out and about despite feeling like crap.

 

it is so good to know others are experiencing the same side effects, gives some comfort to know we are not alone on this horrendous BC experience X

Member

Re: January 2019 chemo starters

It’s good to know you turned a corner on day 10 LB2. Are you on the filgrastim too?. I think the jabs contribute to the joint pain and fatigue.

Thank you for posting WelshJ and Anne67 and joining the chat . We all learn from each other and I for one value your input.😊 Knowledge is power.

I have had joint pains and my bloods will now be low (days 7-14) and the last two days, I have dragged myself out of my bed. It’s been hard, but the hardest part was finding the oomph  to get out of bed! Once I had got over this hurdle I went for an hour’s walk. It did my mind and body the world of good to get out in nature and see the early signs of Spring and i definitely had more energy upon my return. However, the weather has been lovely here the last couple of days and that makes a difference.Worth a shot if you can...

good luck Sunnydaze xx

LB2
Member

Re: January 2019 chemo starters

Hi P67Anne

Welcome to the chat. Bone pain on day 3,4,5 was my main symptom after first docetaxol too.  I found paracetamol and ibuprofen took the edge off. My tastebuds are off as well, lots of sweet chilli sauce on my meals but still have good appetite. I had some insomnia but just one night, I put this down to the steroids and the bone pain kicking in, should have got on to the painkillers sooner I think. Everyone suggests getting out for a daily walk but I couldn't manage it. With the bone pain I just wanted to stay inside under a blanket and keep warm.

 

Hope things improve for you soon, I seem to turn a corner on Day 10 x

Member

Re: January 2019 chemo starters

Hi everyone, new to this thread, was diagnosed on the 5th October with 55mm grade 2 multiple invasive ductal carcinoma & LCIS on the left side. Had a mastectomy with reconstruction & a wire guided incision  on the 16th Nov. Started EC chemo on the 3rd January & last Thursday 7th March had my first round of Docotaxel. Was ok at first but by Sunday was having a lot of bone pain,which I was warned about but combined with insomnia, no appetite & lethargy I have stayed in bed , wondering if anyone else has experienced similar, thanks xx

Member

Re: January 2019 chemo starters

Hi all , haven't posted since week 2 of chemo as I wanted to see how it all panned out although been reading everyone's posts daily. We are all so different and some of you bless you have and are having such a hard time of things. I am on weekly taxol for 12 weeks and herceptin every 3 weeks, also radiotherapy. I have just completed week 10, 2 more to go. I have a picc line which has been a little troublesome in giving blood so they put some drain cleaner in it this week which had to stay in for an hour but has worked. Yea !! I have been cold capping throughout which is gruelling and adds lots of extra time to your treatment but I'm pleased to say so far so good I still have a head of hair. I only gently wash it once a week after chemo day. Like all of you say the first 15 minutes are the worst then it's pretty numb. I keep a weekly journal of symptoms and side effects and a sort of pattern emerging to tell me the good days. I have had  various side effects , slight nausea, diarrhoea , constipation , sleeplessness and of late really tired probably due to coming to the end of treatment. But in reality it has not been as bad as I feared thank god. Now starting to have the planning appointments for radiotherapy. Feels like this will all never end. Thinking of you all on our journeys. Sending love and hugs to all of you, who feel like my friends. The support and information you all share is so honest and helpful.

Member

Re: January 2019 chemo starters

Hi Sunnydaze 

Im now day 14 of T and like you, I am so far preferring it to FEC even though I have had quite a few se’s. My aches and pains started to get a bit easier yesterday although I am still taking fairly regular pain relief. My nose started to bleed, day 11, not pouring just on wiping. It was like that for 3 days. I also started to get a spotty face/rash around this time but seems a bit better today. The worst thing at the moment is my taste buds. Everything salty/sweet/slimy yuk! I’ve got to say, all this is preferable to FEC. Hated the spaced out feeling that gave me. Hope your sore throat and thrush clear up soon. It’s good that you’re not neutropenic.

Take care xx

Member

Re: January 2019 chemo starters

That’s such great news LB. I’m pleased to hear this.👍👍👍 It will give you a wee boost. I hope you do something nice for yourself today to celebrate. 

I am now on day 8 of T. I have to say although I was dreading it, I have found it easier than the nausea with FEC. My final FEC3 was hard going. I think the main thing for me with T (and I’ve had to take the Figrastim jabs for the first time with T, this time, 10 days worth) is the joint pains and fatigue. I have got the joint pains under reasonable control though with Dihydrocodeine and a paracetamol combo. It’s working well, but I have been much more tired this time, possibly the cumulative effects? Not sure. My taste buds have also gone a bit  arye,  not in a horrendous way, but random foods suddenly taste a bit weird, definitely anything processed tastes odd. Most foods just taste a bite bland. I ended up with a throat infection and thrush on my tongue. I am on antibiotics for throat, it’s under control and not neutropenic I’m on Fluconazole for thrush.

Despite all of these things, T has been easier than FEC, so far. I haven’t been so foggy headed and had more clarity this time round. 4 down 2 to go👍

Thank you for the ladies replying re; a meet up. I might well be able to make a meet up in London or a central location if one is organised at any point. However, at the moment it seems there are a couple of Scottish ladies who would like to meet up. It seems we live fairly close, so I am sure we can sort out an afternoon tea in Glasgow or Edinburgh . At the moment I feel a bit rough, (as we all do, ☹️)but when I’m feeling better I will contact you and be in touch to sort out a wee treat.

Much love and strength to all chemo ladies, we’re getting there, slowly but surely xxx

sunnydaze😎

LB
Member

Re: January 2019 chemo starters

Hi all

well i’ve Just had FEC x 4 so halfway through and with the good news that the scans show lots of shrinkage and some gone altogether it makes it all worthwhile. 

Hugs to all 🤗🤗🤗

Member

Re: January 2019 chemo starters

Big hugs,  Stuck at 14.❤️❤️❤️ I’m sorry, this must have thrown you into a complete tail spin. At least they’ve picked it up now and can help you deal with it, although it’s not the news you were wanting to hear. We are all thinking about you and sending love and strength. Xxx

Member

Re: January 2019 chemo starters

Just found out I have braca2 mutation. Does anyone else have this going on too? Anywhere to go for info/forum? Feel back at the start and overwhelmed, not to mention having to tell my mum. :-( 

G
Member

Re: January 2019 chemo starters

Thank you Kip, really appreciate the rads info, G 

Member

Re: January 2019 chemo starters

Thank you for this helpful advice too Kip. After reading both your’s and G’s posts, I really do feel rads should be prescribed for me. I will push on this when I next go to the hospital next chemo.

Thankyou for being so helpful and open Kip, means a lot xx

Member

Re: January 2019 chemo starters

Thank you G,

This is really good sensible advice. I will definitely mow ask a radiologist oncologist to look at my path report and get another opinion. I will also take along my screenshot, as a basis for dialogue, when I see my chemo oncologist. This stuff is really scary and it’s my life.

Good luck with your next round of Chemo G. I had ‘T’ on Wednesday and so far I agree with everyone else, the side effects haven’t properly kicked in yet. My mind is clear, less foggy, but my hips are just beginning to get sore.... I understand your need to lay off social media, but don’t lose contact with us all.

Big hug right back atcha!

sunnydaze xxx

 

Kip
Member

Re: January 2019 chemo starters

Hello ladies, just been reading your posts and thought I would drop in on two fronts:

 

Sore/tired eyes:   I suffered with really watery sore eyes from about FEC No. 3 onwards, cooincided with losing eyelashes too, so I think that didn't help.  My nurse said it is a common side effect of chemo and to try to avoid excessive wiping and rubbing.   It did carry on until the eyelashes started to grow again, once chemo finished the eyelashes came in quite quickly.   Eyedrops are a good idea. but unfortunately it seems another lovely gift from chemo.

 

Rads:   I see some of you are asking about whether you should have Rads or not.   My diagnosis was Grade 2 ductal tumour 22mm, with some calcifications around it which totalled 55mm in all, I had 2 lymph nodes affected and 1 with micromet.   I had a masectomy (no recon) then 6 x chemo then ANC (no more infected nodes) and then had 15 x radiotherapy.  My ONC said that they take into consideration a whole host of things when deciding on treatment, age, tumour, grade etc, and that they wanted do "belts and braces" approach to target everything as being younger you've got more life to live!!   I have never been told Stage or Oncotype score (and haven't asked.. too scared).   All I know is the radiotherarpy team said to concentrate on the fact that the masectomy got rid of it all, the rest was just a mop up!  Definately good idea to go armed with questions and get the facts about the decisions they have made, it can all become confusing when you are in the middle of it all.   If you do need Rads, I found it so much easier than chemo, tiring going every day but in and out and home again without the dread of sickness, hair loss etc.. just some lovely tattoo dots and a bit of sunburn.  Not sure if this helps anyone but just thought I'd add my story.

Kip

x

G
Member

Re: January 2019 chemo starters

Hi Sunnydaze, massive hug.  I do feel somewhat better about the plan now I have had the chance to get my head round it.   I can however imagine your anxiety is heightened around this even more now.  When you see your onc next you definitely need to be asking for your pathology to be reviewed for rads benefit.  I would take in your screenshot regardless of it being American research and go through it with them, good basis at least for a factual discussion.  I will probably go quiet here for a while as chemo time and I tend to shy away for a good week plus on social media type things.  Thinking of you, G

Member

Re: January 2019 chemo starters

Thanks so much kc72 xxx

Member

Re: January 2019 chemo starters

Hi MaMa JuJu

Strained that’s exactly how they felt. I wanted to pop them out - give them a little rub better and pop them back in. 

Hope the eye drops work and all goes ok with the onc tomorrow. 

KC72 x

Member

Re: January 2019 chemo starters

Well I am not expecting too much as you never know how you will react, it’s going back into the unknown side effect wise! 

 

All will be revealed tomorrow mind you!

 

I hope you are doing ok. 

 

Xxx

Member

Re: January 2019 chemo starters

Thanks very much kc72. I did mention to the oncologist and I will be getting eye drops in my goody bag tomorrow, fingers crossed it helps. I haven’t been wearing any make up so definiteky can’t blame it on that. 

 

I feel as though they are strained. Did you get that too?

 

When I spoke to the oncologist I mentioned a sore head and then he got me concerned as he was talking about having a CT Scan. I do think it is tired eyes but it’s got me a little worried just in case there is something wrong! 

 

I am hoping the eyes drops help 🤞🏻! 

 

Xxx

 

 

Member

Re: January 2019 chemo starters

7F2CB0AB-D6C9-43BA-823A-5FF7BDF1EF3D.png

Hi G,

i have been getting a bit twitched about not having rads and I couldn’t find out much info on the need for rads after mastectomy. I too was grade 3 with high grade DCIS. My tumour size was mixed in in with the DCIS at4.3 Cm and also my path report said “provable lymphatic and vascular invasion”. I had 3 nodes removed only 1 had a micromet the others were clearbut no rads. I don’t see how this can be right. The above outlines the guidelines for radscafter mastectomy. It’s American guideline though. Your story has made me want to push even more for rads. Good luck with your research

 sunnydaze xxx

G
Member

Re: January 2019 chemo starters

Aww thanks sunnydaze, I know you are right in my heart of hearts, I am now googling rads like a demon as have ignored all of this side!  I hope you get a good discussion when the time comes too xx

Member

Re: January 2019 chemo starters

Hi G

i can’t help you with time scales for rads, it is a bit of a bummer for you, but like you said you need to throw everything atvthos disease

your situation is similar to mine in size and grade I think, but I haven’t been offered rads, but when I see my onc at the end of my treatment I am going to ask about rads. I am in a gray area, I think, but want s good explanation if told no.

Good luck. It’s a shame when you have booked a holiday.

sunnydaze xx

Member

Re: January 2019 chemo starters

Hi MaMa JuJu

I’m in Dec thread. After my third EC my eyes were really sore/tired, and constantly streaming. I used over the counter eye drops from Boots (moisturising) and stopped wearing eye make up and that did the trick and really helped. After my fourth EC not had tired eyes. 

Hope that helps x

Member

Re: January 2019 chemo starters

Thank you That’s brilliant Neecy❤️ so far we have yourself, me, Stuck at 14 and Dikat showing interest I think. Oh and I have just seen Mamajuju is interested too. That’s great! 😊 When we have final numbers we could suggest a location given where everyone geographically lives and where everyone fancies! I put Edinburgh as a starter because it’s a lovely place to visit, but happy to go with the majority.

sunnydaze xx

Member

Re: January 2019 chemo starters

That’s brilliant Neecy❤️ so far we have yourself, me, Stuck at 14 and Dikat showing interest I think. When we have final numbers we could suggest a location given where everyone geographically lives and where everyone fancies! I put Edinburgh as a starter because it’s a lovely place to visit, but happy to go with the majority.

sunnydaze xx

G
Member

Re: January 2019 chemo starters

Hi MaMa JuJu, I have tired eyes, using some drops I got over the counter just to refresh eyes whenever I feel like it.

 

Hi Everyone, Question, I am on my 4th EC tomorrow then move on to to 

docetaxel for the next 4 cycles.  I was told yesterday however I will need rads once chemo finished after all.  Myself, breast surgeon and onc always presumed this was unlikely due to having had a mastectomy after lumpectomy uncovered more cancer, however, consultant reviewed and due to it being an aggressive invasive cancer (grade 3) and having lots of intermediate grade non-invasive too, I am at high risk of it coming back.  They want to ensure any remaining cells in my chest wall and skin are targeted, anyone else got to have rads after chemo & mastectomy or do u not need this??

My oncotype DX results originally came back as high for distance recurrence hence having the chemo, which we were all hoping I wouldn’t need but obviously, like u guys, I got my head around and started this journey.  I am feeling really low and disappointed as I thought this would all be over at end of chemo (obviously recon, currently have tissue expander (not sure what rads impact will be here) and 10 years of tamoxifen still to go but I had hoped the most brutal side would be completed) 😕

 

Also practically I’m worrying about how long after chemo can start rads (question i will ask when meet consultant) as have sunshine holiday booked and not sure now wether this will mean I can’t go due to timing or how long you have to wait to go on a plane etc....

 

Any advice?

Big hug you amazing ladies, G x

 

 

 

LB
Member

Re: January 2019 chemo starters

Hi MaMaJuJu

Yes when my oncologist mentioned it to me she said it would be weekly - but much more gentle than T. She said we’ll discuss all the details at our next meeting. I have done a little research and I read that it can be given weekly for 3 weeks then a week off for around 12 weeks but as yet I don’t know all the details. Another adventure eh 😀

 

hugs 🤗

Member

Re: January 2019 chemo starters

Hi Sunnydaze, I would be interested in a meet up and I live I Glasgow xxx

Member

Re: January 2019 chemo starters

Hi All,

 

Quick question.

 

Has anyone suffered from tired eyes? I feel as though I need to clear them all the time. 

 

Cheers! Xxx

Member

Re: January 2019 chemo starters

Hi Sunnydaze,

 

Thanks for the info on the oils, I have now ordered both and they come tomorrow. 

 

I hope your treatment went well. 

 

Take care xxx

Member

Re: January 2019 chemo starters

Hi LB,

 

i saw my oncologist today o day as I was getting my bloods for tomorrow’s cycle. He never mentioned about getting it weekly and I didn’t think to ask. I shall see how tomorrow’s treatment goes and take it from there. 

 

Are you going to be getting it weekly if the oncologist decides that’s the drug for you? 

 

Xxx

Member

Re: January 2019 chemo starters

Hi Sunnydaze,

 

i would definiteky be interested. 

 

Lucky for me I live in Scotland too in a place called Larkhall so only about an hour from Edinburgh. 

 

Xxx

Member

Re: January 2019 chemo starters

That’s great Stuck at 14. Thanks for the reply . Let’s see if any one else is interested and take . We do deserve a nice treat. Let’s see where people live and take it from there ❤️👍