Hi there, it’s 5:00 and so 5 hours sleep. I consider this ok given the situation. I’m very confused at the moment and don’t know whether to feel happy, sad, frightened. The truth is it is a mixture of all of it, and pretty exhausting.
I went for a check up to see what a lump on the side of my neck was in March, absolutely positive that it was a reaction to my C19 jab 3 days earlier.
An ultrasound and then biopsy shocked me hearing that it was a non differentiated neuroendrocine tumour. My world of course fell apart that night and it has been a very difficult three months.
A CTScan, on my chest and abdomen areas and then an MRI scan on my neck and head have showed that (as far as is possible to know) there is no sign of a spread of the cancer to other parts of my body.
During this time, strangely, the lump in my neck has also dissipated to the point where it could no longer be felt by my wonderful Cancer doctor MTD team members. I think they are perplexed in trying to understand what the heck is going on and what to do. Apparently the results of the biopsies were rechecked with same diagnosis.
The course of action was agreed as a neck dissection in the area of the original ultrasound and biopsy diagnosis, removing tissue and the lymph nodes in that area. I had this procedure 5 days ago and am now recovering. My neck is sore, bruised, numb and I am having some difficulty with the nerves around my mouth that shape my speech but I understand this should adjust fine over the next couple of weeks.
The surgeon and team have said to me that they could not ‘see’ anything of particular concern that clearly showed cancer, and now I am awaiting the results from Pathology for whatever is taken away. This should happen in next 2 weeks.
I remain frightened, anxious, devastated at having to deal with this, but at the same time I’m trying to be positive and even optimistic.
I’m 68, fit snd pretty healthy. Given that NET is a somewhat slow growing type of cancer I’m perhaps unwisely (?) hoping that this ‘removal’ and ‘all clear’ on any spread might be something to be optimistic about.
I would love to get anybody’s feedback please.
it has been a tonic just to write this. My wife and I have two wonderful children and four grandchildren but we can see the sense of telling them any of this.
terry
Hi again Terry jokester, it’s two years since we last talked.
Sorry to hear you are on the rollercoaster again..... but that’s incurable cancer for you. Like you my type of blood cancer is incurable but at the moment behaving itself.
Lets look for your medical professionals to find a clear way forward for you. Early December 2013 I had my ‘massive’ neck biopsy done under a general...... I totally understand what you are experiencing, but all these years on there is no visible signs of the ‘chunk’ that was taken out but some scar tissue inside that I always think keeps me on my toes.
I think you did comment on my story in our first discussions but reflecting back to 1999 when I was first diagnosed it’s amazing g that 22 years on I am still around and doing good..... especially as I am in a period of long term remission that in the early days was ‘not possible’ I was told.
I developed the frame of mind that I could not control any of the medical stuff, what ever came along was my lot and I trusted my medical teams to do their thing..... my part is this was not just a passenger but being an active participant controlling the battle between my ears.....
Some of our survival slogans are:
“Giving up is not an option”
"What's next?’….. we always asked "What's next?”
“My illness DID NOT define us - our Strength, Courage and Faith did”
Wishing you good results and a way forward to be put in place soon.
I do indeed remember that great name, thanks for your kind words and fantastic to hear you are doing so well my friend. 
