Hello, and thank you Blood Cancer Uk for directing me to this forum.
My husband has Chronic lymphocytic leukaemia (CLL), which is well managed with Ibutrinib. As a family, we have been extra careful during the last few years, especially during shielding. So far, we’ve managed to keep him safe (dodging bullets!). But it would be interesting to hear of others experiences of catching covid with the same blood cancer and treatment as him. In my head, I have catastrophised the situation, should it happen. But I’m basing this on what we’re told ‘could’ happen, and not actual first hand experiences. Thank you very much for any responses
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Hi @Mandy a great big welcome to you.
I also have Chronic lymphocytic leukaemia (CLL), I was diagnosed 18 yrs ago and I have not had any treatment, but have been on Watch and Wait or it is sometimes called active monitoring.
Since diagnosis I am prone to infections, I have kept up to date with vaccinations and was careful when gardening and being around young children and animals etc.
I was very aware of avoiding situations where people might be coughing and sneezing.
I had my flu jab and thought no more about it.
Fatigue will always be my the symptom I manage on a daily basis.
Covid hits and I am now very aware of being classed as ‘clinically extremely vulnerable’ and also things like washing my hands for 20 secs, general cleaning and all the things the government advised.
Yes, I have been isolating for the last 2yrs and only going out for an early morning walk.
I buy everything on line.
My husband is my weakest point as he does go into the odd shops, but other than that he has also been isolating.
The high spot of our social lives is medical appointments.
I try and live in the day.
Yes, we have both got to learn to live with Covid as I keep on hearing in the media.
I have got to stay vigilant, but also have a life and social life.
I also thinks that the media has a lot to answer for with our fears and anxieties.
So I hope you do not mind me posting and as I know that I haven’t exactly answered the question you asked, but I hope this has been of some use to you.
I think you demonstrate so clearly how firstly blood cancer is a family condition and secondly often so difficult for the families emotionally, thoughtfully and practically.
You are obviously so caring so I hope you can look after yourself as well as you do your family.
I hope others will actually share their like experiences to you all.
Please keep posting
Hello Mandy
My husband is 58 and was diagnosed with Chronic lymphocytic leukaemia (CLL) 4 and a half years ago. After one failed round of chemo he started Ibrutinib. He was doing really well but last August he had pneumonia. He stayed in hospital for a week and it took 3 months to recover. After only having returned to work in December, he then became infected with Covid! He received steroids and antibiotics but was not hospitalised. He is much better but is still suffering from a horrible productive cough. He is having a CT of his chest in a couple of weeks time. The consultant said there is nothing that they can give him for it at the moment. I’m hoping the cough will go soon.
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Hi @Jammydubs a warm welcome to you too.
You have just shown the value of this forum by your response to @Mandy.
Your husband has really been through the mill and my son, who does not have a blood cancer, had the Covid cough for ages after he got Covid over Xmas, it is really nasty isn’t it.
Look after yourselves and I look forward to hearing more from you.
Hi @Erica and @Jammydubs,
Many thanks for your replies. It’s great to get an insight into other people’s experiences of living with, or alongside, Chronic lymphocytic leukaemia (CLL). Especially during covid times. Your life sounds like it continues to be very isolated Erica - how does this impact on your mental health (if you don’t mind the direct question)? The reason I ask is because taking precautions over such a long period, started to make one or two of us in the family feel unhappy and anxious, and became detrimental to our mental health. After a few discussions, we decided to venture back, with care, into more ‘normal’ activities - train travel, live music, uncrowded pubs. My husband has also had 4 jabs, which, rightly or wrongly, has given him (and in turn, us) some confidence. It really is a case of everyone doing it at their own pace, and weighing up covid fallout versus mental health. Tricky.
@Jammydubs , thank you for talking about your husband’s experience. So sorry to hear that he suffered with pneumonia AND covid, and that he’s been left with a horrid cough. I hope he gets better very soon, and that you get some reassuring news from the CT.
Thank you both - very much appreciated.
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Hi @Mandy no, of course I do not mind your question.
I have been extremely fortunate and I realise so many others have had their mental health affected.
Pre Covid times I met a lot of friends socially for coffee’s etc. and spent too much time at the gym in Pilates and Zumba classes, I also had some commitments with groups.
From the start I decided to be very structured.
I got up at the same time every morning, did a Pilates dvd every day and when restrictions eased an early morning 2 hr walk with my head phones playing.
I found a jig saw which I never touched and put back again a few months later.
I reflected upon my life and decided who and what were important to me.
I resigned from some commitments.
I realised good family and friends were priceless, that social interaction.
I embraced Zoom, Skype, the telephone, email and whats app to keep in touch with family and friends. I sent cards.
I have never been bored or my mental health been affected.
What is the realistic risk out there, I just do not know.
I really feel for you in a bigger family unit with children.
It is one thing if I, myself go out and catch Covid, but as a family member if I brought Covid home I would feel so, so guilty. But also I would not want the dilemma of stopping a family member and a different generation socialising, being in education or work.
What I am impressed with is the discussions you are all having.
I will be venturing out more soon.
I hope there is someone out there that can share how their and their families emotional health has been affected.
It is so, so tricky
Ah yes, those early lockdown days were very odd! But also quite nice to step back from a busy life and take stock. My husband turned our garden into a running track, haha! The grass has never regrown. We were strict on ourselves and wouldn’t watch an episode (or two) of Breaking Bad until 3pm! Best wishes for your slow and steady move back to doing some of the things you love, with your friends and family. We’ll get there 
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I can identify with so many of these comments. Experiences of others, even if anecdotal, gve some perspective. I was refused a 4th jab at first but after verification through Blood Cancer UK (Thank you!) that I should have a 4th, wrote to GP and got the 4th 11th Feb 2022. I’ve now signed up for a reputable antibody test because if we have a succession of jabs I wanted some indication of response. I know antibodies don’t tell the whole story but the 4th jab (Moderna) did affect me and I’m hopeful one reason could be a better response from my immune system even though it was 20 weeks after my 3rd. I also report most days through the C19 app as it seems one way to add data the scientists may be able to use and also gives some feedback of local situation.
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Thank you very much for your reply and for sharing your experiences.
I hope you continue to stay well, and that life starts to feel a little easier as time goes on.
Mandy
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