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Testing Positive for Covid when you have a chronic blood cancer

Hi there, unfortunately the worst has happened and my Dad who is nearly 77 and is on watch and wait for Chronic lymphocytic leukaemia (CLL) has received a positive Covid test today. Obviously feeling very anxious and extremely worried. He has symptoms now for 5 days but I am very scared it could get worse. Has anyone on here been in the same situation who can talk me through it or provide advice - I would be most grateful. Thanks

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Hi @bethcarla, a great big welcome to you I am so glad you have found us, I cannot help you with your question but we are all here to support you and if you would like to speak to someone you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
I expect you are both feeling very anxious and extremely worried.
You say he has had symptoms for 5 days and what I would say is that he, or if he cannot you, contact his medical team, either his GP or hospital or ring 111 or if really critical 999. It is perhaps stressing his age, that he has blood cancer, CLL, and his symptoms. I always keep a diary of symptoms.
There is good information on the Blood Cancer UK and 111 websites.
But personally I would say if your father feels and gets worse it is worth ringing 111, or 999, and perhaps be persistent.
Take care and please let us know how you both are are and perhaps you need to isolate now as well.

Hi @bethcarla and welcome to the forum. I haven’t been in that situation, but oh my goodness, I can imagine how worried you must be. This is such a good place to share as well. How is your dad handling it all? The blood cancer uk support line may be a really good place for you to get advice. They are open tomorrow Between 10am and 1pm so may be worth giving them a call. Please let us know how you get on. Sending special wishes X

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hi @bethcarla im 48 and have had CML for 14 years so not quite the same as your dad but I had suspected covid which lasted for about 10 days back in March ( all the symptoms - temp of 38.1 , cough, tight chest, no sense of taste and smell plus fatigue , body aches and headache etc so my consultant said 99.9% sure it was it even though i wasn’t tested) .i was really lucky and recovered but still have issues with taste and smell. my father in law is 81 with dementia and also has CLL so we are very aware of how frightening it is. i would say get in contact with your dads medical team at the hospital rather than gp in my experience and if any issues with breathing just ring 999. 111 is ok for general advice but best to speak to the oncology team who knows your dads case in detail who can give you more tailored advice as the doc i spoke to at 111 gave very generic information. hope you dad is ok xx

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Hi @AdeB, welcome to our forum, it must have been pretty scary for you back in March and a very isolating place to be as less was known about Covid then. Thanks for your experiences.
I think this forum has been so vital to support each other through this year of Covid times. It sure has been a funny old year, my emotions have been all over the place.
I must be horrible still having issues with your taste and smell.
please keep letting us know how you are doing and if you would like to speak to someone you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.

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Hi @bethcarla and welcome to the forum. It’s really great that you have shared your experiences. It will help others. You gave good advice on contacting your medical team as well, I think that’s so important! It’s such a stressful time isn’t it. I hope you are all taking care and managing to keep your spirit’s up :blush:

@bethcarla a warm welcome to the forum. I’m so sorry to hear you’re going through what sounds like an incredibly worrying time. How is your Dad doing? Have you managed to talk things through with his healthcare team? We have everything crossed that your Dad recovers quickly. As the others have said, our support line is here for you and your family if you want to talk anything through.

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Hi all, thanks all for replying and your support. I’ve did actually speak to someone on your helpline on Friday, so appreciate the support and all your comments.
I sit here in a state of anxiety, constantly checking in on my Dad. To add to this, my Mum is most likely positive too (waiting for the results), but so far all she has had is cold symptoms and loss of taste. My brother, sister in law, niece and nephew all got tested positive and I am still waiting (now more than 48hrs) for my results, though I have no symptoms and I am hoping I am negative (as my boyfriend, who I have been staying at, has had two tests in the last week (he has them for work) and both have been negative, but strange things do happen).
Trying to stay positive, but I know this week will be critical. Thanks @AdeB it was good to hear your story and I’m glad you came through it and I hope you fully recover soon.
Please can I ask, if anyone else has any positive stories they can pass forward or any practical advice, I would really appreciate it.

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That must be very worrying for you. I hope that the outcome is good for you and do let us know how you get on.

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Hi there, further to my original post back in October and all the lovely help and support I received from this forum and the helpline, I just wanted to follow up with my story which was published below today. Hopefully it can help other people going through the same thing.

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Thank you so much for sharing this @bethcarla, really hope your dad is going from strength to strength. What a worry for you and your family! Wishing you all the best.

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Wow, @bethcarla, thanks so much for writing what has been happening to you, scary times, it really brings it home. Take care of yourselves and your Dad and keep posting.
Has anyone else had Covid so close to home?

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Congratulations @bethcarla on an excellent article! Thanks for sharing x

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Ps of course more importantly, so happy to hear your Dad and all of you are ok x

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Hi All,

I’d like to share with you that as a 68 yr old, double vaccinated, male with Chronic lymphocytic leukaemia (CLL), I tested positive for covid on Thursday 9th September. At the time I experienced cold symptoms and these reached a peak over the weekend. Since then I have made a gradual recovery and I am close to finalising my isolation. I’ll never know whether the vaccinations worked or if the virus was just mild but I will definitely be taking the booster when offered.

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Hi @jimmee, thanks it is so useful to hear others experiences and especially someone who has been double vaccinated, but contracted Covid, scary times for you and yours.
I am so glad that your symptoms were just about manageable at home, although your recovery is slow.
Look after yourself and give yourself time and yes, have the booster when offered.
Please let us know how you progress.
Has anyone else been double vaccinated or not and caught Covid?

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@jimmee

Thank you so much for sharing.

I’ve been anxious and not sure if I’ve been really lucky or my behaviour and choices has strayed covid away for the past 17months. Though I have wondered what would or will happen if I caught it.

I know everyone is different and I have a different blood cancer, but it’s great to hear you’re on the mend and making it through (obviously not great you caught it). Can’t imagine what went through your mind when you got the positive result… but I am curious

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@erica

I’m curious too… Should make a useful post.

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Hi Rammie18 and Erica,

At no time was I in extreme difficulty, it felt like a heavy summer chill/cold. I wasn’t surprised to have caught it as the virus is now endemic. I always felt better with a cross breeze in the room I was isolating in, ventilation made a big difference to my demeanour. I slept for up to 9 hours a night and I usually get by on around 5. It still feels as if I have a bit of a head cold but I tested negative today and my isolation ends tomorrow.

What is odd is that there are double jabbed, younger, healthier, people than me who have been hit harder. I imagine it depends on the viral load one is exposed to.

I will continue to socialise but will always avoid crowded environments.

Hope this helps

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Thanks @jimmee, I had my flu vaccine today and, as usual, the nurse told me of the side effects I might get and guess what it was like the symptoms of the start of Covid.
Look after yourself and perhaps please give yourself time to recover.

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