Friday, 3 January 2014

I'm back !

Hopefully, I'll be back to my old self soon. 

If anyone knows of a good blogging app for the iPad, please let me know. The one I use doesn't allow me to change the size of my photos or add links to the internet.

Wednesday, 1 January 2014


Well, it's finally 2014. At last. Hopefully, it will be better than 2013 turned out for me. At my diagnosis appointment. I laughed with the neurosurgeon when I realised it was the 13th August, 2013. He said your not superstitious are you ? I did point out I'd doubt, I'd happily have my brain surgery on a Friday the 13th. When I asked the nurse how many stitches I had, she replied 13 !!! So really I'm not sure if it's really not my lucky number. 

If I hadn't found out about my tumour, who knows what would have happened to me in 2014. So really , maybe it was a lucky year for me. 

My neurosurgeon, Mr David Choi, performed a miracle. 

He managed to remove 100% of my tumour. A tumour that was considered extremely challenging because of it's locality, size and it looked like it had an artery to the brain growing through it. He expected to have to perform 3 operations, just to debaulk my tumour, ready for me to under go radiotherapy. So it was a big shock to everyone, when he managed to scrape my tumour from the artery, and unwrap it from all my cranial nerves. He had to make some decisions which have left me with some deficits. He had to cut some main nerves, to get the tumour out. So I now have Dysphagia, which means I now talk with a lisp and it's difficult for me to eat. My tongue and throat are weakened on one side. My bladder and some of my body feels numb. The bladder is bliss, as I never feel the urge to repeatedly go to the toilet like I used to.

One of my breasts was damaged, during the surgery. I had to be strapped to the operating table for over 6 hours. My arm across my breast, caused some of the breast fat tissue to die because of the compression. It was one of the most painful parts of my recovery. It is being checked that it is in fact fat necrosis and not breast cancer. As the two appear to look similar on mammograms. So, I will be spending more time in hospital in the coming weeks, getting that checked thoroughly.

My spine fusion also played up, big time after the operation. I found it very painful to stand or walk. So I spent the first few weeks, just laying comfortably in bed. With regular anti inflammatories the pain has almost gone now and under control.

It was weird as I found the surgery in my head the easiest bit to get over. That was a breeze for me. The complications were the hardest part. It didn't help that the Drs didn't really take them that seriously in the beginning. I think it was because I'd had such serious brain stem surgery, they couldn't comprehend that anything could be worse than that.

 I left hospital and was immediately re admitted to a local one by ambulance, because of my spine pain. That hospital turned out to be a real mental challenge for me. I actually went a little mad my daughter thinks. The pain was so acute, I spent most of the 24 hours in there uncontrollably screaming. They didn't know what to do with me and it was a weekend of course. So they advised me to come home, where it was safer for me to recover ! 

It's just over 5 weeks now since my operation. I have got to work on my strength and fitness now and try to build it up. I tire easily, but I am finding I can do pretty much all the things I used to. I will begin driving again next week. I'm very lucky as most brain surgery results in epilepsy. Because my tumour was under the skull and in the tentorium region and involved the brain stem. I won't suffer with epilepsy. This means I am able to drive on recovery, which is 6 weeks after surgery.

 I wasn't expecting to be so well so soon after the surgery, and I bought myself a shopping trolley. I could have done with it after my spine fusion. On it's first outing, we rather over did the shopping !

So as I continue to improve, and with the incredible outcome of my surgery, I have chosen the word Rejoice as my " one little word " to live by in 2014 . I have been choosing a word from a list by Ali Edwards for the last few years. Other years I have chosen the words capture and story. I didn't choose one last year for some reason. But I thought the word rejoice was a great word to try and live by. I have a lot to celebrate and rejoice in this year. I will be celebrating my 50th birthday in May.

 Before my tumour diagnosis I used to wake everyday and be filled with peace and happiness. I used to have a niggling worry that something would come and destroy my peace. Well it did for a few months, but hopefully I'll soon be back to rejoicing each day, each little thing and get my happiness in being alive and well back.

Wishing everyone a happy and healthy 2014 xxxx


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