Cll

Hi Nasus and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. 

I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

I am so sorry to heat about your sister, my sincere condolences. Her CNS Lymphoma was a High Grade Lymphoma and can unfortunately be very aggressive and if not caught early it’s hard to treat successful.

I was on Active Monitoring (Watch and Wait) for over 14 years before I needed full on treatments. With these slow growing conditions it is often best to only treat when treatment will make the best impact on your cancer, treating quickly just uses up some of your treatment options and often results in quick relapse.

CLL is actually often seen and treated in the same way as some Low-grade non-Hodgkin lymphomas, yes very confusing but generally blood cancer can be confusing.

Travel Insurance will unfortunately now be a problem and for me but do have a look through the 'recommended travel insurance' thread and this New Thread in our Travel insurance group as it's where the majority of recommendations from other forum members are. Clicking on the link I've created will take you straight there. You might also want to look at this thread as it includes a link to a Travel Insurance Directory. 

There a few new members joined the group recently so let’s see them pick up on your post.

You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos etc.

They run regular Support Platforms...... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

They also have a Lymphoma helpline on 0808 808 5555where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.

Always around to help more or just to chat

Hi Nasus

So sorry to hear about your sister and your diagnosis

I've tried to add to the thread Mike has provided but it's locked. 

We had Africa booked but had to change as my partner was diagnosed with CLL and is on watch and wait. He could not have the live yellow freezer vaccine so the travel company allowed us to switch without penalty, as he was diagnosed 6 weeks before we were due to go, under their special circumstances  policy. We changed to Thialiand in June and looked for insurance. After searching so many providers including using those on the government list on the .gov website we found one for £46 for 1 trip ( year cover is astronomical).I will hunt it out and post. We have also used Insurefor.com for the Maldives in Oct for the same price and a few long weekends in Lanzarote  and Majorca in Jan and Feb. 

Will find and hunt out and post later