Webinar "Why Am I on Watch and Wait", April 12th 3:30 PM

Living with and after blood cancer
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Hi, this is from our friends at Leukaemia Care:

Are you a CLL patient who is unsure of why you are on watch and wait?

Did you know that 13,000 chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) patients are on active monitoring, also known as ‘Watch and Wait’ in the UK? We understand being placed on watch and wait can be a very confusing and upsetting time.

In order to help you understand watch and wait, and how to live well whilst on it, join our webinar on the 12th of April, where we will be joined by specialist speakers to answer any questions you may have.

Register for free here

What topics will be covered?

  • What is active monitoring?
  • Why are the majority of Chronic lymphocytic leukaemia (CLL) patients not treated straight away?
  • Should you ‘watch and wait’?
  • What do you need to know to help manage living on active monitoring?
  • Where can I learn about my diagnosis?
  • Who should be available to support me?
  • What else can I do to support my health (e.g. vaccinations)?
  • Are there any techniques to help cope with active monitoring? How do I do this?
  • Who should I tell that I am on active monitoring? How do I do this?
  • What support can I get from charities?

Sign up via Zoom here

We will be joined by:

  • Professor Chris Fegan – Emeritus Professor Cardiff School of Medicine and Consultant Haematologist University Hospital of Wales.
  • Charlotte Bloodworth – Advanced Nurse Practitioner University Hospital of Wales
  • Bryony Tyrell - Lymphoid Clinical Nurse Specialist University Hospital Southampton NHS Foundation Trust
  • Chronic lymphocytic leukaemia (CLL) patient with long term active monitoring experience
  • Chronic lymphocytic leukaemia (CLL) patient who is new to active monitoring

Webinar details

When: 12th April, 3:30pm - 5pm
Where: Online via Zoom and Facebook Live
Who: Leukaemia Care and guest panel
Registration fee: Free
Who should join: Those affected by Chronic lymphocytic leukaemia (CLL), patients, family, and friends

Sign up via Zoom here

Watch on Facebook on the day at 3:30pm

How do I join the webinar?
The webinar is being hosted on Zoom and Facebook, meaning you can choose a platform to suit you. Zoom is the best place to ask questions, but if you join via Facebook we will try and get all the questions sent over to our panel; however, please expect a delay.

Information on how to join via Zoom or Facebook is below.

Watch via Zoom
To join via Zoom, all you need to do is register your attendance before the webinar starts. You will then receive an email inviting you to join the webinar on the day.

Watch via Facebook
To join via Facebook, all you need is a Facebook account. Once logged in head to Leukaemia Care’s Facebook page at 3:30pm on Tuesday 12th April and find the live video (it will be at the top of our feed).

Please note, we will not be able to give individual medical advice. You will be directed to your own clinical team if we cannot answer your question in the webinar.

Due to the large amount of registrants, we cannot guarantee that everyone’s questions will be answered, but we will try and do our best in the time frame that we have.

If you have any issues registering via Zoom or issues on the day, please get in touch by emailing advocacy@leukaemiacare.org.uk.

See you there.

Charlotte, Patient Advocacy Manager at Leukaemia Care

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Thanks @DavidAmbassador unfortunately I cannot make it another head dressing appointment at my GP’s.
It looks a good’un

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Hi @Erica Hope it is going well with that, and that it is getting better, know this has been a while now.

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Hi @DavidAmbassador, yesterday, on the day before the 4 day back holiday, I was awaiting the results of a sample of my ‘sluffy’ hole in my head. The result had not come back at 9am when I had the dressing changed.
At about 4 pm a message was left on my phone by a doctor to say that the result had just come back and I will need some medication and to contact the surgery.
Unfortunately when I got the message, an hour later, there were no GP’s there, but a comprehensive message was left for me if I got a temperature or head got worse where I could get medical help over the weekend. The surgery also texted me the details.
The surgery offered me an appointment for Tuesday but I am already seeing the nurse at 8am for a dressing change.
So far so good although I keep imaging symptoms !!!

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Hi@Erica,I am sorry to read this ,just what you dont need .I’m sure you will know if you do need attention but its just an…
other thing.Its reassuring that you can get help if you need it ,just to say thinking of you ,nothing like being told "If it gets worse ",and leave it up to you ,and you are always so reassuring to others …:wink:
Bannanacake

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Hi @Bannanacake thank you, I am still fine and the weather is glorious here I have just been for a walk along the river towpath, stunning.
I hope your weekend is enjoyable

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Hi @Erica ,how are you going with the "sluffy"hole I hope its behaving its self and clearing up.Its good to hear you are enjoying your walks ,its so good to get out for a stretch.
The robins are going silly along with the black bird now its spring. I had a voucher for Hobbycraft so I got more brown felt pieces,thinking ahead ,not usually like me but I couldn’t resist a freebie :blush:

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Oh @Bannanacake I am a girl for a freebie too.
Thanks for asking about my sluffy hole in my head.
The nurse redressed it today and reported good news. Although I haven’t been on the antibiotics long but the hole has stopped bleeding and is a bit less sluffy.
My latest adventure is that I had a trip on my towpath walk and skinned my left hand and knee.
I also have a shiner of a bruise on my upper arm .
I am on arnica for the bruise and painkillers so with my other meds I am rattling.
I have seen baby bunnies, parakeets and ducklings this week.
Aren’t we lucky, look after yourself, you are so supportive to others on our forum.

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Hi @Erica ,dearie me,that was a bit of an adventure,when you trip theres no going back and I bet you had a fright,good it was only a few scrapes and bruise so I hope you are recovering ,yes arnica is agreat help.Last trip I had I broke a rib :tired_face: but it wasnt in vain as we complained to the road company and they redid the pavement !Its great that the antibiotics are working on your sluffy bits ,Im not surprised you are rattling !Thank you for your kind words @Erica and I hope you can continue to enjoy the towpath walk,it sounds a bit 'Wind in the Willowsey"
Bannanacake

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