Definitely get on to it! Let me know how you get on 
2 Likes
I have ET too. I will have a third vaccine as soon as I can. I donāt understand why NhS refuse to do antibody test. I paid for a private test after my first vaccine which showed I had no antibodies at all. This week I paid for another test. It is now 5 months since my second jab. The test showed I have weak immunity between 0.5 and 5. Virtually no protection at all. When I have had the third vaccine I really think the NHS should do a test.
I consider myself very lucky to have escaped catching covid. I have taken some risks. Life has to go on. In the last few weeks we have been on a cruise, been to a concert with over 7,000 people and taken grandchildren for days out.
If I had known my second vaccine had given me so little protection I may have been more cautious but would have had no fun!
5 Likes
Paid for a blood test.(Roche) Ā£49 from Testing for All. Ordered Wednesday, results by text Saturday. Excellent service. My result was 32.10 U/mLā¦
As I understand it a zero response is 0.8 U/mL or less. A good response is 1000 U/mL and a full strong response is greater than 2500 U/mL. Happy to be corrected here.
In the absence of any meaningful advice or
guidance from the Government or medical profession who identified me as extremely clinically vulnerable in the first place(how did they do it? They seemed so sure) I will use the raw numbers. The numbers say I have had a very weak response so I am being extremely careful and will continue to protect myselfwith the help of my family. Not helped by the very large numbers of people who no longer make any attempt to be responsible. Hope my third jab is soon.
5 Likes
Very tempted to get tested reading the posts about checking antibodiesā¦
Peace of mind more than anything else
1 Like
Hi @ilivesunshine there are no rights or wrongs about what people choose to do, and I am sure some enjoyment and fun is a wonderful tonic.
1 Like
Hi, Iām new to this forum, but so nice to be able to discuss things with people who actually understand, rather than those who think weāre completely OTT with our precautions!
My husband has been on W&W for a number of years. I was so pleased to hear the announcement about third jabs - but it seems very loose around whether he will qualify or not ā¦ do regular blood tests/haematology appointments count as āfollow upā? I really hope he can have this third vaccination because we are still, in effect, shielding and it would be nice to get a little bit of our lives back ā¦ just to be able to see our grandchildren indoors, or maybe go out for the odd meal. I have my fingers crossed that W&W will be offered this - but what do others think?
3 Likes
Hi @Ruth and welcome to the forum. I was thinking the same as you. The wording is very confusing! I did read the full JCVI guidance which helped.
What is your husbands diagnosis? I have Non Hodgkins follicular lymphoma and have been on active monitoring for 4 years to, with four monthly appointments and bloods. Iām assuming I will get it after reading the guidance. However, who knows 
Iām waiting until next week and then Iāll check with the GP.
How have you both been? I look forward to hearing more from you
2 Likes
A great big welcome @Ruth, you are in the right place.
@Nichola75 has given you a brilliant response.
I have also been on watch and wait for a number of years, I have Chronic Lymphocytic Leukaemia and I am still confused.
I am still in effect shielding and like you I do not ask for much but a bit of normality and social interaction would be wonderful.
Blood Cancer UK will probably give us some clarification and guidance when they know. @Alice_BloodCancerUK and @Bav.BloodCancerUK
My answer is I await clarification and developments and if that does not work I will contact my GP, I am on the Clinically Extremely Vulnerable list, and be pleasantly assertive.
2 Likes
Hi Nichola, thanks for the welcome. My husband was diagnosed with CLL about 6yrs ago following a routine blood test. His health in general is fine, although 3yrs ago he got a chest infection which wasnāt dealt with quickly enough (partly our fault, partly GP) and he ended up with pneumonia, sepsis and kidney inflammation (temporary). His health has been fine since (apart from the usual arthritic things that come with being 67!). We led pretty active lives - playing indoor bowls several times a week - until the pandemic but we are virtually shielding still. Earlier this year, when cases were lower and masks/distancing were here, we were hopeful of getting back to bowls this September, but unfortunately that isnāt going to be possible; all the measures the club were putting in place have gone out of the window ā¦ no masks required in the area we all congregate in prior to matches, so we could potentially be sitting with 40 unmasked people! My husband thinks Iām a bit OTT with my cautious attitude - but thatās because he never reads anything about his condition. When we have our sons & grandchildren to visit (in the garden) I feel like āthe only sober one at the partyā constantly saying ādonāt get too closeā, ākeep your face away from grandadā. So any possible extra protection from a 3rd jab would be very welcome 
. Keep safe.
1 Like
Hi @Ruth. Itās really difficult isnāt it. I think we are all a bit over cautious at times and thatās only natural.
Iāve decided that I only do what Iām comfortable with and that varies from person to person, family to family. Iāve had to return to work and my children return to school tomorrow so Iām just getting to grips with my concerns and questioning what I need to.
Itās a shame you canāt get back to the things you enjoy just yet. Hopefully - if we get it, the third vaccine might make you feel a little more settled?
Has your husbands consultant given you any advice of what you can/cannot do or precautions you should be taking?
Itās good to hear that your husband is feeling well. Are you children understanding of your concerns? Itās so difficult when there are children involved as well as all they want is a cuddle! Actually, all we all probably want at the moment is a cuddle!
1 Like
I guess we are lucky in that we donāt have to work! It must be so difficult for you with work and children at school.
At his last haematology appointment (telephone) we were both waiting for our second jabs - so he just advised to carry on being careful, and we went through what I should keep an eye on if (God forbid!) he tested positive. Next appointment is just over a month away and my husband is going to ask his advice on antibody testing. My thoughts on that are mixed.
Our sons say they understand - and theyāre intelligent, grown men - but I still think they donāt quite get it! I got particularly upset where bowls was concerned because my husband runs a mixed team - and, despite knowing his health condition, all bar one said they had no intention of wearing masks when we play; so if thatās the reaction from our friends I just donāt feel itās safe for us to play. A compromise is for the two of us to play together early morning when itās quiet - but their lack of understanding is disappointing.
I keep telling my husband we just have to be patient a bit longer ā¦ treatments are available now that werenāt a year ago, and Iām sure more will be available eventually. Meanwhile Iāve still got a couple of rooms for him/us to decorate - so itās not all badš
4 Likes
I contacted my gp and was told they had no details of the 3rd jab at all yet. Lack of information is very frustrating. The vaccine minister said on Andrew Marr this morning that we were being included in the booster programme starting in the middle of september. Very odd
3 Likes
New to the forum so not sure which button to press to respond.
Lance, I was interested in your response and the range of measurments. My response was 25 but is was measured as BAU which are binding antibodies rather than just anti bodies. I was told 50 would good good protection so i was still very vulnerable. This was done at my treating hospital so not done privately.
1 Like
Hi @Ruth Perhaps a compromise is a good idea as a starting point with bowls, then your husband will also have plenty of time for the decorating later in the day !!!
I donāt think anyone else can really understand unless they are right living in the situation and not living a life outside as well. For me that is why I need this forum as you all really understand me better than family and friends.
Perhaps asking his haematologist is a good idea and personally I am not sure how reliable a Covid test is as it might give you the number of antibodies, but what quality are they.
I just donāt know the answers.
New to the forum so not sure which button to press to respond.
Lance, I was interested in your response and the range of measurments. My response was 25 but is was measured as BAU which are binding antibodies rather than just anti bodies. I was told 50 would good good protection so i was still very vulnerable. This was done at my treating hospital so not done privately.
1 Like
@Ruth I totally understand, itās so hard to be in a situation where the safer things get for others (because of vaccines) in some ways the less safe they get for us, because the virus is suddenly everywhere. I have some friends whoāve been very understanding and will come to visit me (very distanced 5m+) in my garden and masks (I realise that may sound OTT but Iām a completely single parent and sole carer for my autistic son, who has literally no one but me, so honestly I donāt care!), but some friends who see things very differently and just talk about mask wearing etc being a āpersonal choiceā and say theyāre not going to do it. Iāve separated myself from those people because I get too cross & upset to manage my feelings about it, so I can sympathise completely with your upset around the bowls club! I think itās easier for some to believe things arenāt that bad and/or that because theyāre getting better for some people, theyāre getting better for everybody. Iām extremely glad there are some who make the effort and I think some get close at least, or close enough! And Iām grateful for zoom & skype & garden visits & the miracle of home deliveries! In the meantime, I agree it sounds like early morning bowling could at least allow you to continue and yes we just have to find our pleasures where we can, rely on treatments continuing to improve in the future, and try not to get ill for now!
4 Likes
I donāt think anybody completely gets it unless they are in it but itās good that they are supportive.
The consultant appointment seems to have come at the right time. Make sure you have all those questions written down!
The lack of understanding around the howls would bother me to. Itās not hard to wear a mask is it - weāve all been doing it for a while now. Youāre early early morning option sounds good - not the same but at least you can get back out there! Treatments are improving all off the time arenāt they and will only continue to get better! X
2 Likes
Hi @Chrispy and welcome to the forum.
Not many hospitals are doing the antibody tests so itās good you managed to get one. At least you can be advised by your s consultant then as I still there is still a lack of understanding/things we donāt know about what the results mean.
What is your diagnosis and how have you been? I look forward to hearing more about you
2 Likes