“People are very well meaning and can sympathise but rarely empathise, it’s almost impossible, which for me makes it so hard…hard to explain and hard for others to comprehend.”
Since I started this journey over a year ago (when I noticed symptoms) the last few weeks have shown me not only the strength within myself but also the strength within others as they watch me battle through the never ending changes in my body after surgery, chemotherapy and radiotherapy. I have never been sick, other than colds, tonsillitis and the occasional stomach upset, headache. I certainly have never spent time in hospital, or at the doctors (GP) other than the normal things women have to do like smear tests. We all know how much we look forward to those, and like me, I try to get them done and out of the way.
This disease allows for non of that quickness, no let’s just get on with this and put it behind us type of mentality, not in the short term anyway, and for a person whose patience is not one of their stronger character traits, it makes me very anxious. I thought by end of May 2019, I would have lost the peg in my stomach and be eating. I am so far away from that and I recall lying in bed at Calvary Hospital six months ago thinking how good it will be to have a glass of wine and plate of food. How good to spend Christmas 2019 with cold ham and salad.
So here I am Tuesday, spending time working on Plan B, with pain that as now necessitated the use of three different pain killers for different pain.
The type of pain where you get out of bed at 11pm and 3 am to have more drugs because the pain has woken you up. Last visit to the Oncologist told me I now have Lymphoedema inside as well as outside my throat, an ulcer and the surgery has scarring and fibroids developing, and a whole bunch of raw nerve endings that are dancing around my head and neck at regular intervals.
To eat anything soft or drink anything other than water I must gargle with Tetracain- an expensive numbing solution made to bespoke specifications. This numbing also means I can’t feel the food and whether or not I have swallowed it. Still, it allowed me to eat five spoons of baby food last Friday night. So there you have it, you don’t realise how “social” eating and drinking are until you can’t do either anymore. It was a very big part of my life.
Outdoor fitness has meant I still can join in some social activity. Without that I’d be very lost and living as a hermit. This disease has changed my whole life in so many ways.
My old life and social habits have gone and along with it some “friends” – I am trying to understand why others can’t understand what I am going through, understand that every single day and activity requires planning and in some cases medication, fluids and food. How I was before has gone and to put it simply, physically not possible any more. It makes you very aware of everything. It makes you aware of the smallest detail and how you choose to tackle things. That person has gone I have grieved for her, as I embrace and celebrate the new person to replace the space.
It makes you very aware of every day you are alive.