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Diagnosis
I am a State Registered Nurse, having qualified in 1969, and have since retired as a ward sister to have a family! Even so, the two words ‘blood cancer’ were a big shock! The health service worked like a well-oiled machine, and I was subjected to a host of tests, and saw several consultants! Biopsy and body scans, you name it! Finally, I ended up in the haematology unit and with a Macmillan Nurse in tow and was told I had CLL!
Management
When Watch and Wait is explained, at the time you think “OK” that’s a relief! But after weeks and months of reflecting on this makes the mind venture. There’s constant self-examination of swollen lymph nodes and questioning what was a warm night or perhaps night sweats! Every pain, ache, is what I am ‘waiting’ for! But as each 6-month consultation passes, you feel as if you are perhaps a bit of a nuisance. Especially when talking to the Clinical Nurse Specialist. Blood tests seem to be all that matters. Another problem is communication between GP and consultant! I found a lump in my breast; the GP referred me to the breast clinic even though I queried a lymph node! Two painful biopsies later and I eventually was told it was caused by the CLL! Unnecessarily don’t you think?
The COVID-19 Pandemic
Covid has brought its own problems! Isolation, phone consultations, four jabs and no antibodies, and worries as mixing and having a normal life. My GP has been great all the way through i.e., provision for constant recurrent UTI, and general support! The communication between my GP and the haematology unit isn’t always so great.
What I Would Change About Watch and Wait
The diagnosis was swift and well managed, but the concept of Watch and Wait is flawed! It leaves one anxious and over-concerned about one’s health all the time! Consistent support is not there. I want people to know that while patients on Watch and Wait aren’t going through treatment, it causes instability in daily living and needs constant support and the availability of caring staff!
I think perhaps there needs to be an organised group to allow patients to talk and understand the concepts of Watch and Wait.