This time two weeks ago I was lying on an operating theatre having half my tongue removed and replaced with a graft from my wrist, which in turn was replaced with a graft from my tummy. I also had the lymph glands in my neck removed and replaced with the radial artery from my left arm. In addition they removed some other lymph nodes, a couple of saliva glands and a couple of small arteries. I was in theatre for 12 hours because they needed to connect arteries and veins and I am only little, with little veins. So this microscopic surgery requires time, patience and precision.
With the amount of surgery required (over 10 hours on the operating table) it takes 2 consultant surgeons and a large surgical team, as well as the theatre staff and the incredible nurses in intensive care to get me through the first 24 hours.
The fact that I walked out of the Royal Country hospital at lunchtime the following Friday is testament to the skill, care and dedication of a large and wide NHS team.
And the knowledge that I am cancer free, two weeks later, is very much down to the skills and knowledge of my consultant surgeon. He did as he told me he would; he removed the cancer.
So how am I doing?
I have pain in my left ear; apparently this is due to some jaw trauma and with medication it’s completely manageable. This should go over time.
The stitches are out from my ear to my neck and across my tummy. I cannot put Bio oil on yet, as the wounds need to heal for another couple of weeks. Instead, I slather on Vaseline in a nightly ritual that is both comforting and distressing. Comforting, because I am being proactive; and distressing, because I am vain.
My left shoulder is stiff and sore but I understand this is because they have had to cut so many nerve endings around my neck. The physio exercises they have given me will help this.
The left arm still has 28 stitches in it. They are supposed to be disolvable but they are stubbornly clinging on. I can now also access the skin graft, which is an oval at the top of my wrist (just below my thumb) measuring approx 3in by 2in. This means another 32 stitches and some staple damage after they had stapled the blue sponge protecting the skin graft. This graft has taken well and it also gets a coating of Vaseline but only every second night as we need to keep the grafted skin dry and supple.
My tongue has moved from being an alien being in my mouth to becoming an object of curiousity. One day it is smooth like a baby’s bottom; the next, it feels as if its splitting in two. It is still ginormous and is a muscle I can’t control. The sounds that it creates are either jaw droppingly funny, howlingly embarassing or almost legible. I have found a small pocket to the right hand side of my mouth that is not swollen. Careful placement of a single solitary chip is like winning the lottery.
Foods to avoid are those which are soft and lumpy, such as porridge and scrambled egg. Jelly is hilarious – I cannot control where it goes and it dribbles down my chin like I am a 3 month old again. Rice is also to be avoided. Three grains caused me so many issues, made worse that I tried this social experiment when we were out to lunch.
I had to go to the ladies loo and chase the grains around my mouth with my finger. This turned into some Hammer horror nightmare, as obviously every woman in the restaurant decided at the same time that they needed to go to the bathroom! Last night, a small victory; trout and cauliflower cheese, but it’s a slow laborious process and eventually I get bored with the cold congealed mess on my plate.
So I drink a lot of home-made soup and smoothies, occasionally shooting baleful glances at the food police – AKA Craig – who insists items are consumed. I hate the shakes that the hospital have so helpfully provided, so most of the time I smile and swallow as the threat of the shake is enough to get me to comply.
Frustratingly, I still get tired quite easily but I’ve been out and about, making it to a Christmas celebration in the pub in Kingsclere, some lunch and a spot of light shopping in Winchester, some supermarket shopping in Basingstoke, a couple of trips back to the hospital in Guildford and Roscoe’s Christmas Carol service at school.
I’ve had lots of visitors to the house and from the get go I have exercised my tongue muscle, even if I sound slurry and drunk. The whiteboard has remained un-used since we left the hospital ward.
Ahead we need to sort out my speech; this is largely dependent on the tongue swelling. We also need to look out for wound care, particularly on the skin graft around the arm and the neck wound.
It’s all very doable. Frankly I am amazed at how easy and relatively pain-free it’s all been.
That’s my girl!!!!!! Mum xxx
I shouldn’t be amazed as I already think you’re amazing. I respect the way you are coping with this and everyone one around you. The word passive can’t exist in your life. I’m learning from you so much. How out-of-our-hands change can still be controlled and not be a total take over. You are doing it so well and your tribes are here for you when you need the time-out. Tons of love, Karen x