Positive Experience - Covid Antiviral Medication

Hi Nichola,

So sorry to hear that you came down with Covid and I hope you are on the mend. At least it was good that the NHS were able to help you out.

Do take care.

Kind regards,

Lulu999 x

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Thanks @Lulu999. Doing ok. I hope you are to :blush:

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Hi @Nichola75 please be kind to yourself and give yourself plenty of time to recover and replenish your batteries, you are so special xx

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Somebody’s got to be brave and be a guinea pig @Nichola75 . I’m glad you’re getting better. This forum needs you :slight_smile:

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Thanks @Franko. Feeling log a lot better physically - apart from being exhausted and a bit chesty if I do to much x

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This is a good read. Following transplant for myeloma in Jan 2021 at Oxford Hospital, I was asked by the consultant if I would consider joining the Rudy study. This is a study collecting lots of data about your treatment process, well being, feelings, fatigue etc and the reason cow writing this not is to say that it also has a separate string study to understand blood cancer and covid.
I am proud and pleased to say that I joined the programme and the covid study. I sent of last week my 5th set of blood tests following 4 doses of the covid vaccination.
Hopefully this is allowing them to collect good date, understand the two diseases and work out effective treatment for all of us.
Take a look if you are interested, don’t be scared if you sing up by the number of questionnaires to complete they are all simple and really don’t take that long to do.

https://rudystudy.org

Also the overview leaflet not sure how it will come out as an image to get on here as it’s a pdf but can’t upload them.

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I’ll definitely have a read. Thanks for sharing :blush:

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Hello Nichola and Everyone - So sorry to hear that you have had the dreaded covid Nichola and hope by now, as I am a bit behind the times, that you are feeling better. I must say when I had it that my symptoms were similar to yours and felt pretty rotten, but thank goodness for the vaccines and the clever people we have in this country. A little word of warning, I did feel quite wiped out for several weeks afterwards so like everyone says, have plenty of rest. Like Cannon I have also recently taken part in a study. It’s really quick and easy and lets you know at the end of the test whether or not you have antibodies, but not how well stocked you are alas. Warmest wishes to everyone and especially to you Nichola, and wishing your daughter every success in her exams. What a hard time it has been for our children, big and little, they have missed out on so much but hopefully there will be no more lockdowns for a long time. Kindest thoughts, Pat

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Hi @Pat1. It’s lovely to hear from you and thank you for sharing your experiences. It’s good to know how others felt.
It’s funny you should say that, I feel really exhausted 8 days in even though I took the anti virals. I’m planning on going back to work for a few hours this week - if I feel ok (@Erica I promise only if I feel up to it) and have suggested half days. I have to call them tomorrow to discuss. I’m not sure I could face a full day!
The study looks very interesting and it’s always good to contribute to research isn’t it!
Exams going well so far :crossed_fingers:
How are you keeping?

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Good Morning Nichola and thank you for your post. I’m so pleased to hear that you are through covid but do take care, and also the exams are going well for your daughter. It certainly is a nasty virus (even after 4 jabs) and l have found that it is reluctant to leave you for quite some time. General aches and pains and a feeling of being light-headed has been a common theme for me, as well as the tiredness. A little while ago I read something which has stood me in good stead and set a pattern of how I approach things which is that when I need to do something and it may be a struggle, to apply the ‘3 minute rule’ which is for example to get going on that walk and tell myself that the deal is I need only do it for 3 minutes. It gives permission if you like to go ahead and do it and stop after the third minute without the feeling of possible guilt and failure. But of course you don’t and go on to do a bit more and then feel pleased with yourself for having achieved. It worked for me and is worth a try for anyone struggling with motivation.

On the whole I am doing well and thank you so much for asking. I am now approaching my two year remission period and in the next fortnight will have a full body scan and an appointment with my consultant, hopefully face to face as I have so many questions to ask should I be lucky enough to be moving forward without them. A mixture of emotions at the moment, relief should all be well, guilt should I be so lucky, fear should it come back again and I don’t recognise it. I’m sure anyone who reads this will understand all of this and more. But the sun is shinning, we have a wonderful jubilee celebration to look forward to, and if there is one thing I have learned, it is to be grateful for every little blessing in the day.
Take care Nichola and be gentle on yourself for the next few weeks. Enjoy the jubilee celebrations all and let’s hope the sun shines for everyone. Warmest wishes, Pat

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Hi @Pat1.
I love the three minute rule. It’s so important to see what we have achieved and not what we haven’t. I’m going swimming today and have it in my head that I needed to do my full 40 minutes. After reading this I’m going to aim for ten minutes and if that’s all I can manage then so be it. Thank you - I feel less pressured already!
How are you feeling about your scan? I know I get really anxious beforehand and waiting for the results. My consultant has been doing face to face appointments for the last 6 months and it is so much easier isn’t it. I can imagine you have so many questions. I always go with a list!
The jubilee celebrations should be lovely. Are you having a street party or do you have any special plans X

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Hi @Pat1 oh, I love your 3 minute rule and I use a similar trick depending on the task saying to myself I can do this for another certain amount of time or another lap or whatever, it really does work.
Someone once said ‘I couldn’t face eating a whole elephant, but by eating just a small piece at a time I will achieve it’ !!!
Please let us know how your tests and consultant appointment go.
Yes, @Pat1 and @Nichola75 enjoy your Jubilee celebrations, our estate is having one and I have looked in my husbands wardrobe and found him a red, white and blue striped top, so he has no excuse not to make an effort and I intend to to wear a red and white top with a blue cardy and blue jeans. I got my Union Jack napkins today.
Enjoy

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Good Morning Nichola and Erica - thank you both for your posts and I do hope the swimming went well, we all need these little tricks up our sleeves to push forward with life! Yes I am feeling anxious about my scan as I always do, and I don’t think I have many little ‘tricks’ to help with that. But if I do feel overwhelmed with thinking about it I ‘re-group’ which I think is the modern term for just focussing on the positives about how I am feeling, for example I don’t have a cough or any weight loss etc. My daughter said to me the other day “Mum there is no bad news until there is bad news” and she is right.
I never thought about wearing red, white and blue for the jubilee Erica, what a good idea. We are having a jubilee coffee morning next week with all the neighbours. We have lived in the same house for 38 years and it is lovely that we hold regular coffee mornings and keep in touch with one another, but of course the jubilee one will be special. We are also having a jubilee lunch on the Sunday with all the family so yes, lots to look forward to. We just need the sunshine now so everyone can be outside enjoying themselves. I have bought a new garden game for the grandchildren called ‘trampoline tennis’ which looks great fun, but I wouldn’t be surprised if the boys end up wanting to kick the football around despite my best efforts to arranged treasure hunts and games!
I will definitely be in touch when I have news and sending everyone warmest wishes for a lovely jubilee weekend. x

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Glad to hear you are feeling better Nicola and the antivirals arrived. My problem is that i have had symptoms for for 5 days now but only tested positive this morning. Tests on the first two days came back negative and I only did another test as i have hospital appointment booked tomorrow (now cancelled). I have felt really rottten with headaches and coughing plus exhaustion but the symptoms have now eased. Obviously too late for antivirals for me now and luckily i coped with the problems but what it i had worse symptoms and had ignored them based on the 2 negative LFT results? Is this common to have false negatives?

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Have you made your haematology team aware @Chrispy? Do keep them updated on how you’re feeling! Wishing you a speedy recovery!
Please do give us a call on the support line if you want to talk anything through or if there’s anything we can do to support you - 0808 2080 888.

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Swimming went well and I did more than I thought I would. Fingers crossed for the sunshine! X

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thanks Alice. My hospital appointment that was booked for tomorrow was with my haematologist so i have emailed her letting her know.

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Hi @Pat1 my other free jubilee tricks were to raid the Christmas decorations and I found red, silver and blue pieces of tinsel, I could make a boa out of that. also red coasters and place mats, some red napkins, red and blue plastic plates and paper cups. A navy. and red scarf to cover a table, a red and blue tea cloth, a blue hat which I shall wrap some tinsel around. It is surprising what I found at the back of cupboards that should have been thrown out years ago.
Sainsburys is providing the Victoria sponge cake (I know very lazy) and I have found red, white and blue candles and roses that are probably 45 yrs old in a drawer.
Not going for the understated here !!!

Good Morning Erica - a lot of super ideas which I would never have thought of, thank you. Glad the swimming went well Nichola!

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Evening all.
@GemmaBloodCancerUK and @LauranBloodCancerUK. Just a quick question. After I took Paxlovid I tested negative after 5 days. Today I have the same symptoms as I had on my first positive day. Did a lateral just because I was curious and it’s shows positive again. Is it normal that you could show positive again because the virus might still be in your body? Probably shouldn’t have tested. I suppose I just want some reassurance that I’m not still contagious as I read about the ‘rebound effect’ with Paxlovid - American news - and I know not everything you read is true - which is why I’m checking in with you X

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