Watch & wait

[Aquilo]

Hello everyone I’m new to the group. My mum is in the uk, in Bromley. She’s on the watch and wait. If you can give any advice to mum which you wished you had known from the word go what would it be please? We’ve had a booklet and told to wait. She feels overwhelmed and also on her own. I thank you for your time

[Psmithuk]

Hello, Aquino and welcome to the site. Firstly, tell your Mum not to worry about it (not easy!), and don't Google, as their information is way out of date. There are lots of new and kinder treatments coming on line all the time, but it may be that like 30% of those with CLL, your Mum never needs treatment. Please look at the Pinned Posts on this page, there is a lot there to help you, and keep asking questions, as people on this supportive site know and have experience of many of the things we worry about.

Is your Mum able to join us on Health Unlocked?

I’m sure others with more experience than me will join in to welcome you.

Chrisx

[AutumnJ]

Hi Aquilo, welcome to the group and welcome to your mum also. I also live just outside London. I was diagnosed 3 years ago and was fortunate enough to quickly find this group. The members on here are extremely knowledgeable and incredibly helpful. It is a big shock to get a leukaemia diagnosis and it can take some time to become used to it and accept it. What I wish I had known at the beginning was to just breathe. For most people this disease progresses very slowly and I am still on watch and wait. It doesn't impact on my life at all hardly. I still do all the things I used to do . There is a lot of information on the pinned posts on this site and it can all seem overwhelming at first, but it's worth reading through them gradually and getting familiar with it all.

[AussieNeil Partner Administrator]

Welcome Aquilo!

Here's a link to our Pinned Posts section.

healthunlocked.com/cllsuppo...

As Chris suggested, can your Mum join us? Any questions she may have are usually quickly answered and with over 18,000 members, there are lots of opportunities for new friendships from around the world.

This post on support options may also be of help.

healthunlocked.com/cllsuppo...

Neil

[Bronze]

Tell your Mum to take her time getting to grips with her diagnosis its a lot to take in. Leukaemia Care have some great resources and booklets and CLL support in addition to this site. If she was given a number for Clinical Nurse specialist it may be worth trying to speak to her in a couple of weeks after Christmas for a 1:1 appointment as your mum is likely to have lots of questions. My CNS explained that at the watch & wait level to think of CLL as any other chronic condition such as Diabetes or Asthma where you need to manage the condition but with small changes / caution you should be able to carry on with life. Unfortunately Covid is a high risk for us with CLL so I follow advice to mix with a small group of trusted friends about 8, we all lateral flow test on Friday before the weekend if meeting up and keep the tracking app on the phone active so if one gets tracked I make a decision weather to meet them that week . We are all fully Vaccinated and boosted. One friend is not vaccinated but I have no contact with that person at the moment. I do go to restaurants but usually sit at the back of the table as far away as possible but avoid Pubs etc that are warm and very crowded. I did catch Covid last year before vaccine available and was quite unwell , ended up in A&E but did not need admission but was off work for 5 weeks and had a few heart palpitations and very short of breath , now mostly recovered . I hope your Mum gets some sound advice , it sounds like she is very early in the disease - which may never progress and even if she needs treatment that has come a long way now . Good luck to you both

[Bluemerlegirl]

Hi Aquilo! I'm glad you found this site! I cannot tell you how wonderful everyone on this forum has been, and what a fantastic resource they have all been! I am from the US, but like you and your mom, I am also very new to this - both the site and the diagnosis. I was just diagnosed last month. I found this site, totally by accident. When I made my first post about 2 weeks ago, I was in a place where I was very anxious, stressed, confused and lost. Since being on here (and I am on here a lot right now as I navigate my way through these initial months), my anxiety has calmed, and I feel like I am learning. What I wish someone had told me the day I was diagnosed, was that I am NOT alone. That there are forums where this community comes together and they have all been on this same journey that started with the word "cancer". I too am on W&W, and everyone here will "watch and wait with me", and they will with you and your mom as well. Tell her to sign up on here, as I am sure she has questions. I know I have a ton, and as I was told the other day on here "there are no stupid questions". This community is a great resource in so many ways! 🧡

[Bubnojay]

Is your Mum computer literate? If so she can do no better than browsing the community ignoring the advanced stuff and just finding how supportive it is. In the years I have been a member, folk like your mum scared of the unknown and feeling alone, have become the very people who encourage others and go on to share their knowledge.

You ask what do you wish you had known at diagnosis, I wish this 11 years later that I had known there are many worse things to have than CLL, (still untreated) and that I would make friends I treasure,

Best wishes stay safe

Bubnojay