Dr Fergiani

I had my three month check up with new consultant Dr Fergiani today. I've developed a DVT since the last one and I've been on anti-coagulant medication for seven weeks. The leg swelling has not reduced as yet so I will have a CT scan. There always seems to be something to worry about, he needs to check there is nothing else going on, which I fear is a real possibility.

I took the opportunity to raise again CAR-T on relapse. If my lymphoma transforms to high grade then CAR-T is an established option, however if it remains low grade then this is a bit of a grey area as CAR-T is not yet a NICE treatment for follicular. He did confirm again though that Bendamustine as a bridge to CAR-T would be available to me. Good to hear him say that again.

UPDATE - having been told on two occasions that CAR-T would be a treatment option I eventually found out that is not the case and it is not currently available for relapsed/refactory FL as a standard treatment (Dec 24). I have since received an apology from one of the other Consultants, she took over my case at a late stage and was very helpful in getting me on the bispecific trial at the Christie. I have to say though it is not good enough for her predecessor to tell me twice that I could have a potentially life-saving treatment when he was simply wrong.>

My petition ended before it really got going as all petitions ceased when the election was called. Thanks very much indeed to everyone who signed it, I sent out many emails and texts and got two signatures back for every one I sent. I know lots of people sent it on but that's where it starts to get difficult and the response drops off. Going viral is tricky! If only I was forty years younger and female ..... anyway, back to the drawing board on that one.

Alex said he liked the photo above, that's praise indeed, believe me. It's the portico at Wentworth Woodhouse near Rotherham. It's huge! A bigger frontage than Buckingham Palace apparently. We read the book, 'Black Diamonds' by Catherine Bailey, about ten years ago and finally we visited last week. It's one of the most fascinating books I've read. Restoration is well underway but it's a huge task, definitely worth a visit and supporting it if you fancy a day out.