When we are diagnosed with an illness that is life threatening we can feel very isolated. It is hard to admit to oneself that we have an illness that is not going to go away quickly. Immediate reaction is often is this a death sentence? It was at one time when one was diagnosed with CLL. I remember being told you will die with CLL not of it. But I would probably get an infection that my body would not be able to fight due to a compromised immune system. Since then there have been many different drugs developed . In the beginning it was FCR. However, the big pharmaceutical companies have invested s o much into research and come up with other options. They also seem to sell them at negotiated discounts to the NHS. We are fortunate in the UK to have access to these with no cost to the patient. It is still a bit of a postcode lottery as to what you are offered according to where you are receiving treatment. Big teaching hospitals are usually involved in drug trials so there you can often access experimental drugs. Local hospitals stick to current accepted protocols. The success rate for most CLL patients is now pretty good.

So this is where we are lucky, Build our tribes! Ask for a referral to a CLL specialist. Ask to be referred to a teaching hospital. When I was first diagnosed it was by my GP. He sent me to the local hospital to see his mate a haematologist who confirmed the diagnosis then put me under my GP for regular blood tests and antibiotics as soon as I developed infection, so my first tribe member was my GP and second one the haematologist at the local hospital.

A few years later my blood test confirmed that the disease was becoming more active and my GP wanted me to go back to the local hospital, by then his mate had retired, I had no knowledge of the haematologist who had replaced him. So I asked if I could find my own consultant. I trawled the internet reading about current treatments and centres of excellence for

Leukaemia research. I found a relatively local teaching hospital at St James in Leeds, coincidentally that was where I started my working life in their pharmacy department. And my independent life in a shared house- with lots of parties and lots of fun away from home! The guy heading their research team was Professor Peter Hillmen. I had read about him. My GP referred me to him despite the hospital being 40 miles from where I currently live. He assessed me and agreed to take me as a patient as long as I was prepared to travel. He was the next member of my tribe. A very passive member for a number of years whilst I was on Watch and Wait with 6 monthly blood tests and visits

I met him on most visits and went to his talks in person and via Zoom. He was personable and human but so knowledgeable. My care gradually transferred to his deputy . Talha Munir is the most amazing man who has now taken over from the Professor who has gone to a big pharma. Tal has big shoes to fill but has that same humanity and empathy. He guided me through my first two treatments ibrutinib and acalabrutinib. Yet he allowed me the autonomy to say the side effects were not sustainable long term and concurred with my decision to cease taking these BTK inhibitors.one of the supposed side effects was actually pancreatic insufficiency and he was key to diagnosing and treating that then passing that side of my care to a colleague He is responsive and reactive and is my go- to person now. No one is so understanding and thinks laterally. He looks at my bladder scan and decided the lymph gland enlargement was CLL not metastatic bladder cancer! 

Another key medical tribe  member is the orthopaedic surgeon trying to sort out my joints! He sticks needles into my knees on a regular basis to inject them with cortisone. On one occasion he noticed changes and sent me for x rays and ct scans. He identified I had a congenital para and intraspinal lipoma which was after 70 years being problematic. He referred me to a surgeon who certainly wasn’t my cup of tea but surgeons operate end of story! I chose not to take that route as the risk of paralysis was too great. I chose instead to see a pain specialist and anaesthetist who recommended  acupuncture. He is the next member of my medical team and is very caring. He also suggested use of medication for nerve pain. That came from a psychiatrist specialising in pain relief and he joined my team. A lovely man! So I have many people in the medical profession who are there for me.

Sadly I haven’t found a urologist or oncologist that works in my best interests. They all tell me to go away and die! My answer to that is not pc!

But I have found other members of my tribe who have stepped up to the mark. Old friends, new friends, BCU  friends some of whom are virtual , colleagues and family. They keep my spirits and hopes up and I am very grateful. They also source information and encourage me to think outs the box! And my imaginary friend is a fire eating , tumour gnawing dragon! He is my source of meditation when I get sick of having cancer! Quite apt as this Chinese Year is the year of the Dragon! Puff!🐉🐲🤞