Hi I am Joan 83 and very lucky to still be here

[ificare]

I would not want to bore you to death ,but I am angry that after a 19yr wait I have found out I also have 2 faulty genes, and my waiting for treatment was never going to happen. I have got a Doctors Surgery now that takes time to explain to me, what is happening with my body, I wish I had left the previous Surgery years ago' as I do think I would have had a lot less stress 😱 had I known. I live in Saltdean by the sea. I have CLL and with no treatment I now have Severe Systemic Disease as well. To me my life is just a waiting game . Having found this group I would love to have chats as I cannot get about to much now, and the days are long and the nights even longer. Love to hear from you all Take care, and stay strong👍

[Madlegs1]

Welcome Jean.

I'm sure there are many people with similar tales to tell.

I hope you get on better at your new Surgery, and will get some relief.

All the best.

[Bevvy]

Hello. I’m afraid I don’t know much about your conditions but just wanted to welcome you to the group. We have a mixture of people here and we all try to support one another so hopefully someone will come along who understands your issues and may have some advice or suggestions for you.

[DollyDutchGirl_1946]

Hello Joan, I’m so sorry to read of the issues you are experiencing. If it’s of any help - I’ve just looked up CLL - (Chronic lymphocytic leukaemia) and discovered - ‘cclsupport.org.uk’ - it’s look a very helpful place for support and advice. It seems that is quite usual NOT to receive treatment during the early stages of CCL. The term ‘Severe Systemic Disease’ appears to refer to a diagnosis affecting the entire body, rather than a single organ or body part, so having CLL - which relates to blood - would affect the entire body. SSD appears not to be a separate disease but explains that CLL is one that affects the entire body. Hopefully, you are under the care of a consultant who you can talk to - and I’m sure they will explain things more clearly if you ask them. I usually write down a whole list of questions about my illnesses - and simply hand them the list and say “please can you answer my questions before we proceed ?” Then, when I’m happy with the answers, we can usually move forward in the consultation. Many people don’t want to know about the meaning of their test results - but if you do, then you may have let your doctor know that you want to know the results - and what they actually mean. If you are only under the care of your GP, it may be worth asking to be referred to a consultant haematologist. Hope you can understand my attemp at explaining things..🫣x