Dear @Ledgell
So sorry to hear that you have tested positive for COVID and that you are feeling unwell. May I ask if you managed to speak to your specialist nurse yesterday? It is very important to inform your Haematology Transplant team about this and I would encourage to do this straight away. Here is the guidance for escalating your COVID symptoms:
Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK
If you do need to talk this through please do give us a call: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Thank you. Yes, I spoke with my nurse and consultant yesterday, and have been referred to my local COVID teamâŚâŚ just awaiting a call from them to tell me what kind of treatment they will give me. Felling pretty grim at the moment, so will be rather relieved once I have spoken to them!
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Hello @Ledgell
Really glad you have been referred and do let us know how you get on?
Take care
Gemma
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Oh @Ledgell I am so glad that you spoke with your specialist nurse and consultant.
I hate awaiting calls.
I really do hope that you get sorted and start to feel better soon. xxxx
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All good here thanks lovely lady 
. We have been doing lots of Xmassy things. Tomorrow we are out for a Xmas dinner with lots of close friends (24 of us) Danae did have a few Xmas cocktails at the Padstow Christmas market to include her favourite - an Aperol spritz.
Going back to work has been okay thanks. I did a phased return and am also using leave. So, I am now off until 2nd January 
.
Hope all is well down West @Fullofbeans ? Also hope everyone else is doing okay?
The DD xx
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Hi @Ledgell
Been thinking of you. How are you feeling? Hope that the Covid team got back to you and you ainât feeling too rough.
Take good care
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Hi My DD reading your post really brought home to me how since we have got a diagnosis, as we have had, we really appreciate everything we do in life.
We go for it.
I know my priorities have changed and the best things in life can be simple and free, my gratitude and appreciation of life has gone through the roof.
Have a brilliant Xmas dinner with lots of close friends tomorrow.
I am glad your phased return to work went okay, I always enjoyed the break between Xmas and the new year.
I have a birthday early in the New Year and in the past we have gone out on my birthday and sometimes been the only ones eating. Now I make the choice to go out on the Saturday instead when there is more atmosphere. Also that way I spread my birthday out !!!
It is my 20th Cancerversary today and I have overdosed on baby Colin the Caterpillars.
Go for it and enjoy my very special DDâs xxxx
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Hi @Ledgell
How are you and your husband ?
My partner & I both tested positive for Covid lately. Iâve managed to dodge it for 3years and it had to happen now !!!
I was given a 5 day course of Paxlovid ⌠luckily neither myself or my partner had many symptoms. He had a kinda heavy cold for 2 days and luckily for me I only had a tickly cough. We are both testing negative now.
Wishing you all the best x x x
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Congratulations Erica on 20 years. Thatâs a fantastic anniversary and reading about you when I first joined the forum made my day not only seem less dark but also much brighter. Norma xx
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A real milestone @Erica! Thank you sharing your story and experiences with us and for always being so understanding and supportive. Twenty years is a long time to be living with blood cancer. I am pleased Colin the caterpillar is there to help mark the anniversary. Warmest wishes Willow xđ
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Thank you @Willow and @Derma donât you worry Colin the Caterpillar (other variations are available) and/or my special shortbread from my supermarket are always there to celebrate all occasions.
You have lived with your diagnosis a lot longer than I have @Willow
Wishing you both every good wishes xxxxxxxx
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Thank you 
Itâs been a bit of a âtwisty turnyâ week. Good news is that my husband is already recovered and testing negative - his elation has been rather short-lived though as he had an unexpected tooth extraction this morning. All feels like a final assault at the end of our âannus horriblisâ!
My COVID has been a different story though - all the vile symptoms possible, including the cough to trump all coughs (especially grim at night). I finally went for the IV drugs (SOTROVIMAB ) at our nearest hospital late yesterday. It was the first time I had worn actual clothes for 5 days (as Iâd been in bed mostly!). Iâm really hoping for much better things as this week progressesâŚ
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Oh @Ledgell what a time you are both going through.
I find when I do not get a good nights rest I cannot fully function properly during the day.
Really be kind to yourselves and look after yourselves.
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Hi @SarahMum and Danae, my DD, and all on this thread.
Look after yourselves and spoil yourselves over the festive period.
We are about on our forum if you need to post.
Love to all xxxxxxxxx
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Hi @Erica and all you lovely people
We hope you all have a peaceful festive season. @Erica - thanks for always being here supporting us all. You are amazing and so thoughtful. Thanks also to everyone who checks in and offers advice and support. We are honoured to be part of a truly special online family 
Yesterday we went to the Christingle service and out for drinks with friends. I got emotional 
(I have been quite a bit of late) I think it has hit me and I cannot believe that we are where we are at this moment in time. Things could be so different. But here we are and I am soooooooo thankful to have Danae with me.
Take good care and be kind to yourselves over the festive period.
Lots of love
Sarah and Danae (The DD) xx
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Hi @SarahMum, @Fifimac, @Erica, @Ledgell and every other lovely forum person.
Iâm sorry I hadnât replied to some posts - Iâve been busy with extra caring responsibilities, and the fatigue has still been bothering me (despite my gym-going - although I think thatâs helped.)
I hope you all had a wonderful Christmas, and letâs hope good health features in all our 2024s.
With much love to you all
Fullofbeans XX
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Oh @Fullofbeans please do look after yourself as well as you care for others and us all
xxxx
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Hello there! I guess we are all emerging after the seasonal gatherings, family visits, eating far too much, not exercising enough�?
I arrived at the +100 days post transplant on Christmas Eve, and so a couple of days prior to that, my consultant decided to start reducing the Ciclosporin. After an initial few days of swollen, sticky, sore eyes, I seem to be doing well. And am now already on just a third of my dose already. I had hoped the eyes thing was a little Graft-versus-host-disease (because Iâm told that, for me, a little of it would be good), but my consultant is doubtful.
COVID was a massive setback and so my energy levels are pretty rubbish, but I think I shall take a leaf out of your book and get back to the gym. Even if I only stay for a nanosecond and then have to be carried homeâŚ!
After a festive season of feeling quite emotional about the events of the past year, I have decided to take a little more control, put on my make up every day, âoutâ my new GI Jane crew cut and choose to be an overcomer.
This journey feels so long, doesnât it? But we are learning to live in that uncomfortable âin-betweenâ of not knowingâŚ
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Hi @Ledgell i agree with the overindulging and less exercise not a good combination.
Also Covid can really take it out of us.
I always believe in telling my medical team about any symptoms I get or that they change.
Yes, I find this holiday period is a time of various emotions and reflection especially as I was diagnosed just before Christmas and I have already had my birthday for 2024
I am finding that low energy levels make it so difficult to make one foot go in front of the other, but changing out of my scuffs, using my curling tongs and putting some make up on really helps me psychologicallyâŚ
Yep life sure is a journey.
Look after yourself
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Hi there, hope things are improving for you each day.
Youâve had an eventful time. Your attitude is good though. Get up and out there, some days are harder than others but itâs best way to be.
I hate being the bringer of not such good news !
I had my 100 day bone marrow in October and it showed up some residual disease , it is at a very low level but itâs still there.
It was a stomach churning moment when they told me.
I have had one cycle of chemo ,14 days of Venetoclax tablets & 5 days of Azacitidine injections.
I have to go to Glasgow in February for some DLIâs , ( donor top up cells ) itâs all been another rollercoaster ride.
Iâm trying to stay positive and look forward but some days itâs just overwhelming.
Anyway , itâs onwards and upwards again ⌠most people going through this disease have as many bumps on the road , Iâm not the only one.
Wishing you all the best for 2024 hope you feel better soon , is your hubby feeling better now ?
Best wishes x x
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