CLIFF & ME
It is so easy to try and present to the world that you are feeling good no matter what, however, I accepted this week that sometimes you just have to be honest with yourself! It’s ok not to be ok!
I have decided to write today about ‘Cliff’, he is an enlarged lymph node mass at the back of my head. He started with a dull ache behind my right ear on 3rd August 2019 and by the 19th August he had grown to nearly 5 centimetres and causing excruciating pain. After two visits to the GP and a course of antibiotics a friend took me on the 17th August to A&E because my pain threshold was decreasing, and ‘Cliff’ was increasing. I was admitted to hospital and given a dose of antibiotics intravenously. The antibiotics were stopped a few hours later, the bloods taken revealed I had no infection or inflammation, ah that explains why the antibiotics the GP gave me didn’t work!
So, who is ‘Cliff’ what is he? All I know is he’s a bloody nuisance laying at the base of my skull and causing a great deal of irritation and pain. He is also causing some frustration for the medical team because he is a ‘mystery’, I ’m a ‘mystery’, my body is not showing markers the medics would expect to find with a such a swelling, growth, lump, mass, however you want to categorise him. Me, a woman who has all the observation of good health with such a growth, what is going on? Well, therein lies the problem, no one seems to know.
Poor ‘Cliff’ on the 19th August had a very large needle inserted into him to take fluid to send for analysis, one week later it revealed “concerning for malignancy of an uncertain type, biopsy or removal required for histological testing”. Now ‘Cliff’ is becoming much more of a concern. The word malignancy just jumps out the page at you. So, does that mean I have cancer? Nobody was really saying yah or nay a tissue biopsy is required for analysis and diagnosis.
11th September tissue biopsy undertaken and I’m hoping this will give some clarity around what ‘Cliff’ actually is. In the meantime I have been living with ‘Cliff’ for around 4-5 weeks and he is not the “best settler”, some pressure was relieved when the aspiration was taken for the first biopsy, but he is making it difficult to sleep and my daily functioning level is compromised due to a multitude of different pains in my head and visual distortions. Plus, other physical symptoms.
The surgeon has been at ‘Cliff’ with a scalpel for the tissue biopsy, of course he is not impressed with this and I reap the wrath of his discontentment. The usual headaches and pain with an added dose of dull ache and continual reminder he is still at the back of my head and hanging on in there. ‘Cliff’ hanger is what he has turned out to be.
Moving on a couple of weeks and the sleepless nights are a regular feature now, not just because of the inability to get a good sleeping position, but with the frustration of waiting for a result and the stress of what if’s preying on my mind. All the while ‘Cliff’, albeit having been reduced in size is still in the back of my mind and my head! Wait, there is a change since the tissue biopsy, I think ‘Cliff’ may have a brother, ‘Clive’ who has moved into the left side of my head, he is a thinner version of ‘Cliff’ nonetheless he is starting to make a nuisance of himself with the same behaviour as his brother! Dull ache, stiff neck, feels like an ear infection but I know it’s likely not.
I met with the consultant on the 11th October a month after the biopsy and a diagnosis is still not forthcoming, “Cliff” is indeed a Cliff -hanger, he is not only determined to stay, it looks as though he intends to have his brother ‘Clive’ touch base with him at the base of my skull. I can’t say I am enjoying the delights of ‘Cliff’ hanging around, it is about time he was toppled! Here’s hoping for a good outcome soon before ‘Clive’ takes hold and the toppling of the duo becomes a more complex procedure for the mission to be accomplished. I am confident that ‘Cliff’ will be diagnosed soon, I know he appears to be a rare specimen, he may be so rare that he’ll get named “Cliff-hanger syndrome”!
I have written this today because earlier this week I felt extremely vulnerable. I let negative thoughts interfere with my positive, focussed and humorous attitude to the ‘Cliff’ situation. I wanted to re-enforce how beneficial it is to have good friends and family around to support when you are faced with the unknown. You are only one thought away from a good thought or a bad thought, is so true. I am resilient, strong and independent; however, this week was the first time in my life where I felt truly vulnerable, the waiting for a diagnosis has impacted on my emotional health. I am grateful I had the courage to reach out and talk honestly about how I was really feeling to someone I trusted.
A trouble shared is a trouble halved.