Latest appointment with my specialist (but on the phone still)

[Harvist]

My bloods are still OK so no treatment needed as yet. That's 11 years now on W&W. I wanted to ask a few questions about things I've read on here over the last few months.

Did he have any more info about the value of the vaccinations for us? No, but of course we all should be vaccinated anyway and the 3rd dose was really valuable he surmised. We talked a little about all the contradictory messages about 3rd dose and boosters. He said they were alerted about a 3rd dose for us by government and they had a week to go through 2000 patients and decide on eligibility, then contact GPs about how roll-out could happen. He wasn't very complimentary about how they were told.

I asked about a shingrix vax even though I'm not 70 yet and he thought it might be a good idea so he has written the request on my notes but said the decision lies with my GP. So somebody else to talk to but as usual it always seems to pay to keep asking.

Ronapreve? We'll only get it of we are ill enough to be hospitalised and he said the hospital would see my notes and I'd get it. So unlike in the States, it looks as if here in the UK we only get it when it's not nearly as useful.

He couldn't be amazingly reassuring about our covid chances and indeed said the often repeated "get vaccinated but act as if you haven't been."

So we are all still waiting for any good news about improved predictions for us after vaccinations. But it was good to actually talk to someone.

[Agfar]

Wow, that was as if I was reading what happened at my telephone conversation recently. I am W+W 13 years. One difference in my appointment was I was told that I could wait until I was 70 (+2 years) for the Shingrix jab. The Doc also said I may not make many antibodies which is a bit scary, all round. Feels like we're still in the dark a bit. I definitely feel more vulnerable now. Mask wearing may become a permanent feature for me. I'm planning to make some pretty ones.

[Vakraas]

I had my most recent appointment with my specialist 2 1/2 months ago - on the same day that I had my second, and successful, interview for a new job.

The catch is that the new job is as chief executive of a heritage charity, where my office is in a UK heritage attraction that has over 50,000 visitors a year (with an aspiration to grow that to 100k post-lockdown) - and where it's virtually impossible to control who accesses the site.

I raise this in reply to your post because I asked my specialist on the day of the interview about whether I could take the job. Even if as chief executive of the broader charity there's no expectation that I engage with tourists, and I can hide away in my office to some extent, obviously members of my staff do have that exposure.

The advice from my specialist was slightly ambivalent. Yes, he felt I could take the job, though he stressed that I should continue to be cautious. I should continue to diligently wear a mask, use hand sanitiser, etc. He also advised me against using public transport, though that problem solved itself. Public transport isn't viable, so I bought a car (electric!) for the hour-long drive to work. That lessens my exposure to the public.

But he was also keen to stress that he just couldn't give me any definitive answers or guarantees about the current COVID risks to someone in my situation. We discussed what data does exist, and he broadly agreed with my layman's interpretation of the then-recent Birmingham University CLL COVID vaccine study (cllsupport.org.uk/birmingha... that, while it was very welcome, the overall sample size made it difficult to reach definitive conclusions about the many different sub-categories of CLL patient.

He hoped that haematologists would be in a better position to discuss risk with their patients by mid-2022, but until then the message to me was not to necessarily shut myself away but also continue to take strong precautions when out in public. He felt I was probably at less risk than CLL patients receiving treatment, but there were no guarantees.

Short version: take the new job, but minimise risk where possible, because they just don't know yet.

For reference, I'm 15 years on W&W, never received treatment, currently very stable. Third vaccine shot booked for 22 October.

[Harvist in reply to Vakraas]

Thanks for this. We are all in the same boat but some of us have to start rowing harder and sooner. Good luck in your job.

[mrsjsmith in reply to Vakraas]

Good luck with the new job I did wonder how you were doing.Sadly I don’t think any of us will get any different answers. Because I am stable 🤞 mine is a telephone conversation with my CNS this afternoon.

Colette

[Agfar in reply to Vakraas]

Good luck with your new job. My haematologist said he thought an antibody test for Covid will come (a reliable one) but he didn't know when. Even when there is, will I feel any safer? I continually look around me to see what other are doing or not doing. Masks and hand gel it is then!