After 3 weeks of us being ill or too busy to have any free time, we finally have a chance to our hobbies. I’m stitching HAED Forest Walk while Pete is building and basing his army. Here’s my starting point.
As I blogged on 11th July about my NF2 consultant telling me the tumour at the base of my spinal cord needs removing, I only just realized it was a quick wait on the waiting list. 3 months. Just over a month but to go. Whoop.
Yesterday we got a phone call from Addenbrokes hospital to confirm the date for the surgery to remove the tumour on my spinal cord at the base if my back. The surgery is booked for the 11th October. 15 years ago on that date I was diagnosed with NF2. It’s quite scary at how fast those 15 years have gone.
I am looking forward to having the tumour removed so I no longer have to deal with the daily pain I have.
We were doing ok until Wednesday morning. I started being sick again and Pete came down with a cold. Both of us have spent those days curled up on the sofa. Last night I was able to sleep in bed but poor Pete was still on the sofa. I’m back to normal but Pete still has a nasty cold. I think this weekend will be for us to just relax and get back to normal. Lol
What a stressful year so far. Lot of sickness and being admitted into hospital because of it. Gamma knife Radiotherapy. News that the tumour at the base of my spinal cord needs to be removed because of the amount it has grown and the problems and pain it’s causing. I’m on the waiting list for that surgery. Once I’ve recovered from that surgery I will be starting more radiotherapy treatment on the tumour at the base of my brain. I will be having the Radiotherapy 5 days a week for 6 weeks. So a total of 30 treatments to kill the tumour. The tumour is causing a few problems. It’s made my zero balance even worse. It’s causing problems with my right hand. Problems with my voice. I’ll be glad once the treatment starts because I no longer want to feel like I have a ticking time bomb in my head again. Been there once too many times already with my past brain tumours. I’ll also be glad once the spinal tumour has been remove before the pain and foot drop get any worse.
There are a lot of days that I feel like Neurofibromatosis Type 2 is winning and I find it difficult to think positively. Every now and then I feel I am beating it. This condition is with me for life. The disabilities caused by this condition are for life. There’s no cure or treatment to minimize the effects. You never know what’s going to pop up next. Some think that this condition isn’t as serious as other conditions out there. Unless those people deal with Neurofibromatosis Type 2 themselves, they will never understand the seriousness of it.
To add to that we’re helping out my brother-in-law who is due surgery on his knee anytime soon.
Just wanted to update on my NF2 Clinic appointment i had yesterday. They said the tumour at the base of my spinal cord has grown and because it’s showing signs of causing problems with my right leg and foot they have decided it’s time to operate. The surgery could be in a few weeks time. I’ll be in hospital for two to three days. Also the other radiotherapy treatment is being looked into for the other tumour in my head. That is tumour seems to be causing issues with my voice because it could be pressing on the nerve that controls my vocal cords and radiotherapy is a better option for me than surgery. The tumour on my spinal cord at the base of my neck has only grown 1mm in 5 years so that is ok to be classed as watch and wait. All in all we feel that it was all good news.