Well howdy doodle?
Sorry I have been AWOL…
The fatigue got the better of me and Shain decided to set up a competition for which of us needed to spend most time in Furness General Hospital this month… he won; he reports - the staff are lovely, the beds are comfortable, the food is diabolical, he hates being wired up causing restricted movement and the wake-up calls every couple of hours are very inconvenient when one is trying to sleep; thankfully he is well on the mend and eating soft foods like a starved Labrador!
I have been having all sorts of new experiences talking with some lovely people from Macmillan and Cancer Care. I’ve also received some support from the Haematology nurses and they came in with me for my last appointment, she was kind and caring on the phone and when I met her, I did manage to forget my notes and some of my questions due to the tears I was not expecting to produce, they came from nowhere like a newly formed spring.
I’ve been so exhausted my capacity to get things right has just not been working properly, ie, I went for my smear appointment, I thought I was 5 minutes late I had been stuck in traffic and called the wrong surgery to let them know I would be late but when I got there, I was actually 35 minutes late as I had got the time wrong! I had also additionally driven round the block unnecessarily in auto pilot driving to my childhood home! I will do all that again another day in the future, I’m sure.
When I started this blog I wanted it to be a record of my journey, a light-hearted version of what people go through with a cancer diagnosis. I also wanted it to be an educational resource for others and I realise I have not yet even fully explained what Non-Hodgkins follicular lymphoma actually is…
So, Non-Hodgkins follicular lymphoma is a type of blood cancer where white blood cells (lymphocytes) are abnormal and clump together and clog up your lymph glands and some of your essential organs. I found mine in my neck and shoulder blades (now encroaching on my chest), however I also have them in my axilla (armpits), groins and abdomen but I can’t feel them there yet, hopefully this is because they are small, not because I have a hefty layer of fat hiding them (really need that gym membership next month).
Other symptoms: weight loss (not seen this one!), fevers, drenching sweats (thought that was menopause), frequent infections and struggling to get over infections (I have had infection after infection for 2 years and been unable to shrug them off), fatigue (I have been doing less and less and still needing more sleep, even though I struggle to sleep, I am completely exhausted, new mattress purchased by my wonderful mother for my early birthday present may help with this one?) and itching (OMG the itching at bedtime is infuriating, sometimes I wonder if I am a cat with fleas trapped in a human body).
50% of people with follicular lymphoma have lymphoma cells in their bone marrow, I have not been tested for this as yet (wait for side effects of this to show in my blood results), it tends to lead to anemia, thrombocytopenia and neutropenia, these things would be picked up on blood tests.
When you have Lymphoma your Lymphatic system is affected and this is normally your natural defense against infection and so you become immunosuppressed, this means trying to avoid catching any infections; in this day and age that’s no mean feat.
It is not yet known what are the causes but it normally affects the over 60 age group, and is more prevalent in people with recurrent infections especially Epstein-Barr (I had this as a teenager) or HIV. On the plus side you can’t catch Lymphoma or pass it on. Hope his makes sense and helps someone understand more about it.
In my next blog I will try to explain how having a diagnosis of a long-term condition especially one that is a form of cancer has effected my mental health.
