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Xeloda / Capecitabine - Your Top Tips, please?

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all,

I really hope you don't mind me posting. I always feel like I'm a bit of a pain as I always have so many questions.

I post to ask about my mum who has been on capecitabine for a little while now. She is currently on her 9th cycle. Last scan results were good and showed reduction in tumour size (fantastic news). She has just had another scan so scanxiety has well and truly set in. I'm a complete worrier anyway to the point where I have just read pages 115-144 on this thread before plucking up the courage to write to you all.

When my mum had her appointment before Christmas her tumour markers were 55. They then continued to fall as low as 36.

She then saw oncologist who decided to reduce her dose ever so slightly. Since then her markers have risen ever so slightly (46, then 62, and most recently 78).

Could this be the dose reduction?

Mum feels well in herself, she suffers with lymphodema which causes her pain, bless her.

I hope you don't mind me posting. I just want to find out information to help my mum.

Thankyou all so much in advance xxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi racer

Glad to hear the nursing staff are looking after you and that you are going to get a bit of pampering. It is so nice to be treated like a woman rather than a cancer patient. I am sure your daughter's school will make allowances for her mocks under the circumstances. Hope you manage to get some rest tonight.

George x
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello racer, glad you are feeling well enough to post. Also glad the nausea has reduced a bit - nasty feeling, and horrible not being able to eat. Well done for the walk along the ward.

 

Enjoy the pampering tomorrow!

 

Look after yourself, and listen to the hospital staff. You are in the best place for now (although I know you really want to go home).

 

Hugs. Barton.x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes Racer, so glad to hear from. You. Sounds a lovely hospital .... hopefully you will feel better after the cossetting.......

Best of luck with the cape on a lower dosexx
Moijan
💚💚💚
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello racer
Are you sure you are in hospital and not a five star hotel? Hair and nails ..wow enjoy.
You are on the safest place although I expect u want to be home with the family but there is good medical care 24/7 there until you are more stable.
Sending loads of hugs and we are all holding hands in cyber land for you to feel better.
Hugs xxxxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks everyone I appreciate your support. Still in Hospital . I was not very well yesterday and could not eat anything. Been prescribed extra anti sickness which is helping. Feel better today and went for a short walk along the ward . Had to sit down for a rest which is a small positive step towards going home.
Don't know when I will be going home yet. It can't be tomorrow as I am having my hair wash/cut and blow dry tomorrow afternoon at the hair salon in the Cancer unit lol and might even have my nails done too ! Think I will feel more myself.
I have a bed by a window so have a good view of the car park and road. Been watching the antics of bad parking lol. But it is a miserable day here.
Still not told the kids due to my Daughter's mock exams but nursing team here said they should accommodate Catherine with what is going on. So we are getting in touch with the headteacher to see what support/options my. Daughter has .
The nursing team here have been fantastic here and are flexible with visiting. My hubby had been able to drop kids off at School and comes to see me until 2ish so at least we can talk about things. There is just one Senior Nure who rang the bell at the end of visiting just a couple of times while I have been here.

Hope everyone is having a good weekend and positive vibes to anyone who is not feeling well. Hugs to you all and I will keep you posted
Xxxxxxxxxc
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Dear racer

 

So sorry to hear your news and I can only echo what everyone else has said. I can't imagine how devastating the news must have been and hope that the Cape keeps you stable for as long as possible. You sound like an incredibly brave, strong woman with a loving, supportive family. Sending you my very best wishes -  I will be thinking of you.

 

George x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh racer, I am SO sorry to read your news! It must have been devastating! Not having children myself, I find it hard to fully comprehend your worries for them, but I truly sympathise with you. I know how hard it was telling my family of my Secondaries diagnosis, so can understand how many times more difficult it must have been for you to tell your parents this news. I think you are doing the right thing in keeping going with your chemo, but it all has to be YOUR decision - don't let the docs dictate to you what they want - I hope your hubby will fight your corner for you, as any disruption is the last thing you need at the moment.

 

I am thinking of you, as I am sure everyone else on the Forum is, too.

 

Hugs and best wishes. Barton.x

 

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Bousy, wet and horrid here too

Have just cheated to park my car... see you all later👀
Moijanx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello racer
Just wanted to send you lots of special hugs and thinking of you. At least you are in the best place ..down in Devon ...it's cold and wet ..ugh ..
Carolyn xxxxxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Moijan,

 

It's cold and wet here in Yorkshire, very miserable.

 

Liz x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello everyone, how is everyone today?

My little neck of the woods is wet and coolish xx

Love and hugs

moinan
Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi racer

So sorry to hear what your oncologist has said.  I do hope that the lower dose helps you and allows you to pick up.  Are you still in hospital?  If so I hope that you are being looked after well and getting all the care you need.  Take care, big hugs and thinking of you.

Nicky x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes,Lovely Helen is quite right...

 

..and I forgot to add that you are entitled to request another opinion...but obviously that could involve travelling and im not sure that travelling would be good for you just now??

 

focus on staying positive, getting lots of rest and eating small frequent  but nutritious meals. Have lots of time with those who love you....We will be here for you xxv

Moijan💚💚💚

 

Have pm'd you xx

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Racer,

 

sorry I hadn't replied earlier, have been pretty hectic today and my b ipad is playing up xx

 

what a shock for you....how dreadful for you to be given such news. Xx

.

(the onc has got to tell you as he sees it......and by telling you...has given you pause to organise your thoughts and decisions)

 

I hear what you are saying...you want to fight xx   you do have choices...even tho it might not feel like it.

 

my immediate thoughts are:- you hold on to your goal of getting your daughter through her prom...a mothers love is a big powerful driver and none of us..........even your onc, have got a crystal ball

 

regarding the DNR.....that is your decision..you are still well enough to make your own decisions and the hospital will have to abide by your own choice....speak out and be clear about that choice, ask them to show you that it has been clearly recorded...

 

As you say, you are wise to try not to waste your time on what might have been...try and focus on what it is that you want.

 

Racer, you have been given a kick in the teeth...im so sorry, xx try very hard to keep your focus on whatever decision or choices you decide to make. .Xx much love and hugs,

 

Moijanxx. 💚💚💚

 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Racer I'm so sorry to hear your news. I can't imagine what you are going through right now - good for you for wanting to keep on fighting. Sending mega cyber hugs to you and your family - I hope you have many many months ahead and that you're surrounded by love and support. 

helen xx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks everyone. It has been a difficult day today . I finally saw my Oncologist. I had a ct scan on chest and abdomen .
Not good news I am afraid. Onc told me that breast cancer has progressed and become more aggresssive. It is in my liver and have inflammation in my lungs. He said He doesn't think I have much time left. Onc said he is worried if I have an internal bleed or my heart could give out as I get weaker.

We are absolutely devastated and been hard telling my Parents . We have decided to not tell the kids yet as my Daughter has mock exams for two weeks.

Oncologist said I could continue on the cape tablets but quarter strength as Chemo will destroy platelets. I said I am not giving up and will fight this . Just want some more time especially as my Daughter has got her Prom in June.
Just feel cheated and angry as I am sure that alternative meds sooner but I don't want to waste my time on what could have been .
I think what upset me most that the Onc wants to put a DNR in place.
I am sorry about this news but you all have been so supportive and kept me going .

Xxxxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Good news Barton! So pleased. B xx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Quick update - Onc visit today, and blood ok this time - massive relief that something is happening again. It seems ages since anything happened, but of course, only really 4 weeks if you include the week off of the last cycle.

 

Hope everyone else ok, or at least comfortable and being looked after (racer!).

 

Hugs. Barton.x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Racer, hope you have also had a good day?

 

have you managed to revamp that ward yet?  Dont you just feel sooo like rearranging all the beds into a circle.....and starting off  a group sing song?

 

 i was always tempted to start a mutiny,    or to sew nail brushes on the bottom of the curtains...to see if Sister noticed? 

 

I suppose, now, you could casually elbow the fire alarm as you pass by on your way to the loo?

 

have a good restxx

Moijan💚💚💚

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Ooh, Babsy, just saw the jar...am so peckish now!  They seem to b doing wonders tho...

 

hope today was a good one for you.

 

 

anyone seen Carolyn?  Please tell her I was looking for her, naughty lady xx

 

Moijanx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

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Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello racer, so sorry to hear you are still in hospital. I understand you hating it, but, as everyone else has said, you are in the best place at the moment. Your exhaustion is evidence of that, and the hospital staff know best!

 

I can understand your children missing their mum, though. Hard on everyone.

 

Hugs, and thinking of you. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Moijan xxxxxx
Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Just tread water for a while..,,,,best go home when you are a bit recovered.

 

Moijanxx

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello everyone, Thanks Moijan . I am still in Hospital and won't be going home just yet. Trying to sort my pain relief and bloods. Feel fed up as I am now worrying and just want to go home.
Nurse said they cannot send me home due to platelets which as you know have been for a while.
I think I got my hopes up as Discharge co-ordinater came to see me what I need at home as equipment .
Feel very tired at mo so do excuse me if any of my words do not make sense lol.
I have had a sicky day today and not eaten much. Think due to new painkillers and having potassium.
Visiting time pressures have eased as we can sit in a quiet room .
The kids are desperate for me to come home. I know if I go home then , I will be back in. Just been told that there are a few people waiting in a and e for a bed. So best staying here. Sorry I am. Not positive at mo just need to concentrate on getting gome.

Hugs to everyone .
Xxxx
Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Babsy
Did you mention which mushrooms they are?

??
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Babsy, i'm very interested in your mushrooms!  My son has been doing some research and found that different mushrooms are used around the world for cancer treatment, he has been out picking mushrooms  that grow on birch trees, that are used in Japan, and making a tea from them which he served to me when he visited, they didn't poisen me which was good! He's fairly knowledgeable about plants and very into natural remedies but i must admit i am quite sceptical about these things.  After reading your post i am wondering if he may be on to something.

 

Hugs Sandra x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Moijan,  well after taking them for four days my platelet levels went from 0.94 to 127. So pretty impressive! My white blood count went from 2.4 to 3.8, Lymphocytes from 0.87 to 2.18 etc. So all white blood cells improving. Having another blood test on Monday 6 March as onc has given me a 10 day break from Cape. 

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Babsy, any word on the mushrooms?

 

keep well!

 

hugs,

 

Moijan😍

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi there Racer
So sorry you are going through it xx
Rest assured the physicians will know what to do....., bloods are very crucial in their decision making. I keep reminding myself, ( myself,!) that oncs are very specialised physicians, not just cancer specialists...... I go to mine with all sorts of queries ( you'd be surprised) and as you know the treatment for pneumonia is often the same as for a chest infection xxx

Try to keep your spirits up as high as your sense of humour! Which is refreshing.........


I have said before, the word palliative feels scary, but these ladies are pretty good with pain control ( perhaps I'll ask one about my knees!) and if we are not in pain, we are better able to focus upon being strong against all the stuff we have to deal with XX

Much love and hugs.... keep in touch xx
moijanxx💖

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone , still in Hospital. Feeling better than I did. Changed antibiotic on Friday . Still on some oxygen and had to have platelet transfusion yesterday. I have had one Doc say pneumonia and another chest infection. They are trying to get on top of bloods. I don't think they know what to do and just treating symptoms as they happen. Just tired.
Palliative nurse has seen me and changing pain relief .
Hopefully I will be home soon . Family are missing me and I am missing home too. Keep you posted .
Hope everyone is ok and tests/appts go well. Xxxc
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Helen, I'm not a breakfast person, and generally hate eating first thing in the morning, so I tend to keep it minimal. I change between a yoghurt, or a choc chip muffin, and have tried digestive biscuits (about 3), Cheddars, Jacobs Cream Crackers - anything really. It's a chore for me to find something to eat to take the pills with. Oh, one I quite like is the Rachael's cream rice puddings from Sainsburys. I get the impression there isn't really a minimum - I think it just needs something to get your stomach working so they just don't sit there.

 

Hope that helps.

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Well someone says that they were advised that a sandwich is fine. I should think that a bowl of cereal or a couple of pieces of toast is enough. That's the kind of thing that I eat and have been ok. 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

What does everyone eat for breakfast?! 

We know we have to take the cape within 30 mins of eating but I really struggle with wanting anything to eat in the mornings. Has anyone every been advised on what is enough?

 

A piece of toast? A bowl of Alpen? A piece of fruit?

Does that do the job do you think? Just one of those I mean, not all 3! 

Helen xxx

 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

It's not my normal oncology team who have given me the additional advice but a private service which was paid for me by a charity.  I'll let you know how I get on and pass on any advice, even though it is addressed at my personal needs. My regular oncologist wanted to know the name of the mushrooms so if I can spread the work within the NHS that's got to be a good thing. 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh racer, you poor thing! You are having a tough time. In a way I'm glad you are still in hospital, because they are obviously looking after you well. I hope you feel better soon. As Moijan says, I expect ypur Onc is staying away to give you a chance to get over the pneumonia - it wouldn't be fair to load you down with too much right now.

 

George - I hope your pre-op goes OK today. And, I'm sure you will, but I hope you have a wonderful time in Portugal and come home well rested.

 

Hugs to all. Barton.x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Racer, you are having a tough time xx

 

Are they giving you physio?  Do drink buckets of water.....to flush out the bugs and the antibiotics can dehydrate us xx

 

sorry you are getting rib pain...yes the nerves around there serve several systems so maybe it is the pneumonia.......And id agree with you...the onc likely thinks ' lets deal with the pneumonia first' as that can floor you, as you are finding out xx

 

keep us posted...we are here xx

 

Moijan💝💝💝

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi racer

 

Glad things seem to be settling for you, but it certainly sounds like you have had a challenging week. You are right to want to remain in hospital, not somewhere any of us want to be, but at least you know you are being well looked after. Perhaps the delay in seeing your onc is for the best. I can only cope with one thing at a time and, at least when you see him, you should be feeling better and ready for the next treatment (it never ends, does it?) Anyway, hope you get a good night's sleep tonight and at least you have escaped storm Doris (not much consolation, I  know)

 

Welcome Babsy, good to hear that your team are looking after you and successfully  trying new treatments which have sorted your bloods. I was on Cape for 6 months and am having a little break now

 

Barton, I have  been on 3 hormone treatments: Tamoxifen, Arimidex and Exemestene. Think onc going to put me back on Tamoxifen as the other two seemed to stop working for me. Lots of trial and error as you know.

 

Right, I am signing off for a few days as me and hubby are taking a mini break to Portugal: Saturday until Thursday. I have a few days grace then it will be my op, depending on availability of HDU bed (I wish I hadn't watched Hospital on BBC2 as I have convinced myself they won't have a bed for me ) Oh well, going for pre-op tomorrow. The fun just doesn't stop.  

 

Hope storm Doris has clamed down in your areas. Have a good weekend all :-)

 

George x

 

 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Aah thanks everyone. I had to have two more units of blood last night. I have had ultra sound on legs and ct scan to check for blood clots. Good news no evidence of clots. But I have Pneumonia in lower left lung and fluid. May have to have fluid drained if it had increased. Monitoring bloods and may need further transfusion .
Good half term but at least I know what we are dealing with and have been on antibiotics since Monday night.
Still feel slightly out of breath when mobilising short distances but hopefully on right track to get stronger.
We have said no point going home until it is fixed.

Just feel let down that my Onc has not seen me and moved review to next Thursday. Perhaps there was nothing else they can do at mo and being treated for main problem at mo.
I had a rough night and needed Oramorph a couple of times. I was restless with neck and rib. The rib discomfort obviously due to the pneumonia .

Anyway hope everyone is ok and not been blown around too much by Storm Doris. Sending hugs to everyone xxxxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Babsy glad you are more or less ok on Cape, apart from your blood count, but glad that has improved for you. I'm glad your medical team is looking after you so well - they seem to be on the ball. Let us know how you get on, won't you?

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi everyone, I usually post on bone mets forum but have just finished round 4 of Cape. Was extremely tired during round 1 but had an easy ride on cycles 2/3, but cycle 4 wiped me of my feet. As my bone marrow is compromised I have the added problem with blood counts. Cape is working, alongside other stuff and my lymph nodes are back to normal so I'm pleased with that. I was fortunate to have a consultation with an integrative oncology service who when looking at my medical notes made some more suggestions of what to run alongside Cape. One of the things I've taken is a medicinal mushroom extract from Agaricus Blazei. Within four days my platelets went from 0.94 to 127. Apparently they've had great success in Spanish hospitals with it having brilliant and quick results with blood platelet levels. I was told to take 2 a days. 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello George, yes, I have had hormone treatment in the past. I was on Anastrazole after my original IV chemo and rads, and stayed on that until the Secondaries were diagnosed. Then was on Cape. It worked so well after 10 cycles, that they took me off that and I was on Exemestane for a few months, before bone mets diagnosed. I have been told that I am only very weakly hormone receptive now, so not quite sure where that leaves me.

 

Have you had hormone therapy?

 

Hugs. Barton.x

Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Oh Dear Helen and Barton, 

 

this alcohol risk seems to come up every so often....like everyone else, I enjoy a drink, especially when Im out in company.

 

however, we should remnd ourselves of the risks.....sad tho it is, alcohol is a risk factor for bc...and Breast Cancer Care have put out bulletins such as this one..

 

http://www.breastcancer.org/risk/factors/alcohol

 

My own understanding s that alcohol is full of sugar, which bc cells love to bits. That alcohol can make tamoxifen ineffective and can increase oestrogen levels.......

 

i will still have the odd drink...but we cant hide our heads in the sand!

 

Moijan😈

 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Barton

 

My my onc is also reluctant to give too many scans so understandable he is waiting until after your third cycle of Cape. Enjoy your remaining free week I am  sure your bloods will benefit from the break. Can you have a hormone treatment? 

Hi Helen, glad Cape is working for you. I had a dose reduction after cycle 6 which helped enormously although side effects were not that bad, but it is all relative I suppose. Regarding alcohol, I was never told not to drink it was just that I lost my sense of taste so wine tasted like vinegar, not very nice. Fortunately, taste buds are back to normal and I am enjoying the odd glass or two of wine:-) 

Have a good week all

 

George 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Helen, glad you are doing well on Cape. I'm glad your hands are OK, but shame about your feet. I have had peripheral nueropathy since 2011 when I had my original IV chemo. The Cape definitely doesn't help either. Yes, the effects are cumulative, aren't they?

 

No idea why you can't have alcohol - it's never been a problem for me as I don't drink (just don't like it!). Is it worth asking your Onc at your next visit?

 

Hugs and best wishes to all. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello george, re your query - I had either 8 or 9 weeks off over Christmas, then one Cape cycle, then the second one since restarting was cancelled, so I recovered quite quickly after the one cycle. Onc next Thursday, and, hopefully, my blood will be OK, so should restart next week. I was told I couldn't have another CT scan until I had done 3 cycles back on Cape, so that has been delayed too. To drink, I have bought some Soda water to try, but haven't tried it yet.

 

Wow - Portugal! I hope you have a wonderful time.

 

Hugs. Barton.x

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all, racer you are having a tough time! We have to manage and get on don't we! It's hard for our loved ones who just want to help and get us better.

I'm lucky that Cape is suiting me apart from the fatigue which is getting worse each clue - just finished no.5 - mind whizzes thru wondering if it's worth it but YES I tell myself, it is worth it.

Luckily no peeling hand sir feet so far but feet really tingle and hurt when in them too long due to peripheral neuropathy, I think that's my Achilles heel, so to speak!

Ref drinking alcohol.. I have alcohol most weekends.. several g and t and glass or wine. Can someone remind me why we shouldn't?! Is it cos it reduces effect of chemo or cos might make us sick?

Best wishes Cape crusaders.. let's keep our spirits up 😁 Helen xxx
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

How long has your Cape break been, Barton? I have been chemo free for 5 weeks now and, I agree, while you  are on chemo you do learn to adapt/live with side effects but, once you come off it, you realise how rubbish it actually is. However, I am not moaning as it has done its job for me for nearly 2 years now. Long may it continue for all of us. I am making the most of my 'free' time as I know I will feel poorly  after op, but it will be worth it (fingers crossed). Off to Portugal on Saturday, until Thursday although doubt I will get insurance so will make sure I don't take part in any adventure sports (as if!!). 

Let us know how you get on when you see your onc, Barton. Sure uggers will have been behaving. Hope you have found a drink that you enjoy

 

Hugs 

 

George x 

Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Great to hear from you, George! So glad you are feeling well on your Cape break - I'm with you there. You don't really realise how cr*P you feel until you start feeling better. I definitely have more energy now, but of course worried about what the little *uggers are doing in there! Probably having a field-day!

 

Glad you said when your op is - I keep forgetting! Please do keep in touch and let us know how you are doing.

 

Racer - take it easy as much as you can (probably very difficult with young children). Glad you managed to enjoy your night in the posh hotel, even though you couldn't enjoy a special breakfast. Hope they let you out of hospital soon, but not before you are comfortable again.

 

Hugs to all. Barton.x