Thank you so much for the live event held yesterday. The panel were knowledgeable, informative and honest. It was particularly helpful to have acknowledgement about our feelings, I am sure very many of us must feel, around shielding and re-engagement with society when we, currently, have no idea how effective the vaccine may be for us with blood cancer. It was particularly refreshing to hear a psychologist being objective about mindfulness. Our anxiety around our return to “normal” is reflected in those who do not have our added complications, however, for those of us who have not engaged in very much for a year now the challenge ahead is quite daunting with all the uncertainties.
I look forward to the next event.
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Thanks @Lababe, it sounds as if you got a lot out of the live webinar Q&A yesterday and what I always thing in comforting an acknowledgment of our feelings and emotional challenges having shielded basically for a year.
I will catch up with it later, the wonders of modern technology.
Thanks for posting.
What are your challenges and uncertainties?
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One challenge I think I will have is being in control of my own freedoms to my comfort level. I do not know anyone else, personally, who has had to shield so the call will come to meet up etc. The Q&A highlighted that it will be a while before our community knows how effective the vaccines will be which is something other people do not understand. I also still need to address my status with regards to treatment and, with another telephone consultation, when will that real discussion take place?
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Yes, @Lababe when will face to face appointments return???
I sometimes do not think that others understand our need to shield. This time I think I am going to be really appropriate, but assertive, as others try to persuade me to meet up.
I need to take care of myself and stay safe and not interact with people until I feel confident we are not having further spikes in Covid.
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I agree. I do not think people understand the need to shield and in addition the conditions for which shielding was recommended are so varied. Each one understandable but for those of us with impaired immunity there is an added level of uncertainty around re-engaging with others. Some shielded individuals will have protection with the vaccine which will, hopefully, reassure them but all that does is leave us in another category misunderstood by the general population.The shielded group have generally been neglected and are not in the road map set out for this year. We are treated entirely separately and then expected to pick up where we left off 12 months ago. Sorry vent over.
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I couldn’t agree more! It was so informative and always good to be reassure about your feelings of anxiety etc. Looking forward to the next event 
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Hi @Lababe never worry about venting along I do not call your post ranting, You are saying exactly what many of us are thinking.
Thanks I cannot agree more.
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Thanks @Lababe for starting this thread! Really glad you found it helpful. Here’s the link in case anyone hasn’t watched it but wants to
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Thanks Alice for the link, just what I needed.
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I found it informative and strangely calming. Just what was needed.
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I may have to re-watch to regain that calmness lost after this morning’s vaccine news! I’ve already been using the strategies!
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I’ve fornd that all my friends know only too well why I need to shield - and I guess that can only be because I have been very frank with them all about the nature of my myeloms.
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I found it all very informative and reassuring. I was diagnosed with CLL about 3 years ago and things suddenly got worse when I developed Autoimmune Haemolytic Anaemia which was successfully treated with Prednisolone over several months and from which I seemed to suffer from every side effect listed. At least I managed to avoid blood transfusions. Like many on here I am worried about the effectiveness of the vaccine and the return to “normal life”. It is just good know there is this forum to turn to for information. Thank you.
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Hi @FionaB and welcome to the forum. It’s such a great place to share with others who understand and it’s so informative. Its also reassuring to have information we can all trust. especially as things are so challenging at the moment. How are you doing at the moment?
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Hi @FionaB a great big welcome to our forum, we are also here to support each other.
It sounds as if you really went through it with side effects to treatment.
You voice exactly what many of us are thinking about the effectiveness of the vaccine on the blood cancer and other similar communities.
I take comfort that Blood Cancer UK will be keeping us up to date with reliable information. There is current information on their website.
I look forward to hearing more from you.
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Hi @FionaB we seem to be learning more about what is and isn’t possible with each passing week and it’s understandable to feel worried. Having a blood cancer is a risk for all types of infections, but Covid 19 has brought that sharply into focus. At some point we each have a very personal decision to make about what level of risk we will find acceptable in conjunction with our medical teams rather than listening too much to what the media are saying. I hope that you find the answer for you.
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Welcome to the forum @FionaB, glad you’ve found us and really glad you found the webinar informative and reassuring. Sorry to hear you’ve had so much going on, it sounds like it’s been really tough.
Just to let you and everyone elso know, we have the second part to the Q&A this Thursday - click here for more info - Ask the Experts: COVID-19 Vaccinations & Research on Effectiveness
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Hi folks, I too was uncertain after having both vaccinations, as I’d heard that it was not certain whether patients with blood cancer would develop sufficient antibodies. I therefore invested in an antibody test (mine was £50 from Lloyds online) - and within a couple of days was given a positive test result, with a level of 1230U/mL. In itself that didn’t tell me what level of antibodies that was so a little research revealed that I was in the middle of the range 0.8-2500 which was comforting. I would recommend that anyone with such doubts should get one done.
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Hi @Julian, thanks for your experience with an antibody test. I am still confused with the results antibody tests give and what in practical terms it means for my CLL compromised immune system. I did an antibody tests after my first vaccine and it was just stated as negative. However middle of the range sounds good to me. As more of the population gets it’s vaccination, the better it is for me!!! Take care.
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