I was diagnosed with CLL about 2 1/2 years ago. I am asymptomatic and feel very fit and healthy. I don't seem to pick up any colds or flu type things and have a very active lifestyle. I am 68. I am also very badly read about CLL. Since the diagnosis I just took the consultants advice to lead a normal life. I was shocked to get the shielding letter at the start of the lock down but have been following the advice generally. I did think it best to ask my consultant for a review and he has just come back with a very helpful response. He has indicated that staying at home and following the advice generally is good but that (based on tests I had done in January of this year) he is happy for me to , with caution, take regular exercise (walking, running,cycling). This is fantastic news for me (and my wife) . I am quite happy never to go shopping ever again and can live without restaurants, cinema etc but exercise is the thing that I miss the most. I thought that this might be helpful for others on this forum and that it is worth checking with your consultant.
Good news from my consultant !: I was diagnosed... - CLL Support
Good news from my consultant !
That is good news. I think the NHS is doing a great job advising and protecting folks with Cll in the UK.
That said, I totally do not get the stay inside order. I think generally speaking those with Cll should be encouraged to get fresh air and exercise. I suppose if someone lived in a very densely populated area of London or some other urban area where they encounter people as soon as they set foot from their house I can see it.
But for those who have a yard where they are alone or for those who have access to places to walk and exercise where they can stay 10 feet or more from others, I don’t understand the advice. It would seem to me the very small risk of infection is offset by the benefits of getting sun, fresh air and outdoor exercise.
I have even returned to playing golf at my club. We each get our own cart. No one touches flagsticks or sand trap rakes and we stay separated on the course. I do live in a warmer client and have been reading the virus doesn’t do as well outside in the sun.
It all gets back to everyone having to figure out what risk they are willing to take. Staying completely isolated and being inside al day is probably safest I guess. I live in a very rural area where houses are quite scattered, so there is really zero extra risk that I can see for me being outside in my yard. Maybe I am missing something.
Can you exercise without meeting lots of people doing the same? I constantly change my route and times to avoid meeting people. We acknowledge, nod and wave but some, particularly the younger adults are difficult to dodge round as they dominate pathways.
Yesterday I drove by myself onto Exmoor. First government allowed trip. Oh the Exmoor ponies and lambs. 10 am and just me and nature. The hedgerows packed with bluebells and wild flowers on the journey. Glorious.
Oh it did lift spirits, I was alive again.
Yes, be sensible, be acutely aware and try to get out there.
We can pretty much avoid any close encounters. We live in Surrey (UK) and whilst not a truly rural area we access onto heath land and forest without using a car. We choose our time and can avoid getting too close. We went out for a short bike ride yesterday morning and it was wonderful, though in future I think we might avoid cycling at weekends. There were a few people around but we were on either road or wide forest tracks , so always much more space than government guidelines. There is a risk of course but we have effectively done our own personal risk assessment and it does feel good to be able to see the world outside of our house and garden.
Sounds like sensible advice. My husband has been on W&W for 9 years. He doesn’t pick up many infections but when he does he struggles to shake them off and he also heals very slowly. Since being allowed to drive out to exercise we have been walking in the New Forest which is just a couple of miles away. We look for car parks with few cars parked and rarely encounter anyone else walking as it is so vast. There’s no doubt that it has lifted us both. We avoid going out at weekends as we are told it gets much busier and that seems an unnecessary risk. The shielding letter was sobering but I feel we are sticking to the spirit of it and trying to find ways to make it work, as we may have a long road ahead.
I'm with you on this one, being outdoors getting exercise and fresh air can only help your immune system.
I'm in Canada/Vancouver island.Im I'm in a great neighborhood with plenty of walking trails, easy to keep proper distance. I've been on Ibrutinib for a year and totally take isolation seriously .Like you I'd gladly give up shopping,eathing out, going to the movies etc. forever to stay safe and happy.
I to just try to live my life.
I had my last blood tests in March and my consultant was very happy not to take the next steps to starting treatment. I was diagnosed with CLL in October/November 2018. I feel incredibly well, lead a very healthy lifestyle, eat well, walk every day and swim every day (or at least until my pool was closed for the duration). I too have not been near any shops nor do I intend to do so for a long time, we have friends shopping for us and I am getting the parcels which I am calling my Red Cross parcels, was advised not to cancel these because if things change and our friends are unable to shop, I would maybe have had difficulty reinstating them. W are missing our travelling and holidays but happy to follow advice. We are lucky that we had beautiful clifftops, beaches and a lovely garden to fill our time.
Stay well and safe
I take heart from your attitude on excercise sailor, think it's so important especially to us.I suppose, like everything else it's all about balance. Thanks for the input.
Ron
Good Numbers ...Good News
Good News of my CLL
Good News
Working while on treatment O&V
Just diagnosed
