It’s nearly 2 weeks since my birthday, 3 weeks since the radiotherapy and 3 months since the operation and things are slowly getting to some sort of normality or at least a long way along the journey.
Since then I have spend 4 hours in A&E on Sunday evening because every time I stood up I would go light headed and unbalanced, this had been happen since the operation, it just seemed to be getting worst and more regular. Fortunately at the hospital the doctor did lots of tests and spoken to the team at guys who i am under and everyone was happy that I ok and they was happy for me to go home. This also gave me peace of mind that I wasn’t going down hill in some way.
In general over the last 2 week everything else is making progress and I am finally starting to see myself that things or improving, I’ve even been able to start using my computer more and sleeping less. The thick saliva is a lot thinner and my voice is getting stronger.
Today I. Have been back to Guys for a videofulroscopy (sorry about the spelling) which basically is when the X-ray my throat whilst swallowing different consistencies of liquid to see how well the muscles are working and to make sure none of it is going into your lungs. Fortunately the team was very happy with what they saw and I can now start to eat/drink gradually thicker liquids such as thick soup, thick milkshakes etc.
I haven’t now eaten anything proper since 21 November 2013 and this for me is a giant step to getting back to normal and eating again with family and friends. But there is still a way to go to get back to normality.
I’m also in Guys today for a two night stay to have my nose tube exchanged for a stomach peg. This is being done for couple of reasons one being to remove the discomfort of tube in my throat and to help me get my swallowing working without any obstructions. Also the nose tube has come out 5-6 times which has always meant another trip to hospital. It is a fairly straightforward operation and I only need to stay in some that they can monitor that it’s working correctly.
As for everything else, I’m producing less salvia and now a dry mouth at night rather than a too wet one, which has its pros and cons. Sleep has improved and most of the pain in my neck has gone and my skins has returned to normal and just now looks tanned from the radiotherapy. As I mention earlier my concentration as getting far better and as some of the drugs are being reduced I am feel a lot less tired during the day. So overall every day is a step forward, some days it’s still 2 forward and one back, but it is going in the right direction.
Thanks again for all your support and prayers at this time.
Neil
March 18, 2014
Hi Neil
I bumped into Neil Hawkins on the train this morning and he told me about what had been going on in your life as I had asked if he still heard from you. I cant believe how something like this can come into your life and turn things upside down. Knowing you though I bet your still smiling and getting on the best you can. I’m sure you’ll beat this and come back stronger than ever. Your in my thoughts and I wish you all the best matey 😉
Phil
March 19, 2014
Hi Phil
Good to hear from you. We all never know if and when something this is going to happen and it was a bit of a shock and I suppose after getting this far it was even harder that we imagined it was going to be. I’m definitely now through the worst stages and on the road to recovery, what ever that’s voting to look like. I now have a voice again although a quieter whisper but this should get back to normal and I still have little energy but again over time this should improve. Been off work for 4 months and hopefully could be back in the next 2 months, so 6 months unpaid as I’m freelancing still but somehow we have managed between us.
You’ve also reminded me I haven’t updated the blog in 3 weeks and I’m back in Guys today for a small operation on my ear tomorrow morning and should be out Friday so I’d better do anyone as I’m sitting here in Guys with nothing to do this evening.
I hope you and your family are well.
Thanks Neil
March 13, 2014
Dear Neil
I have just heard the news of what has been happening to you, via Sandra Heard and Jo Sharples link. Good to hear that there is progress in your treatment and recovery. I will remember you and Sue in my prayers. You were always a great warrior for God at Hither Green in the 90’s so my thought is, ‘He who honours me so will my Father honour’. I pray that God will ‘honour’ you with a good recovery and that you will continue to be a blessing to your family, friends and colleagues. My love to you and Sue.
David
March 1, 2014
Neil,
Your blog has been so informative, letting us know bit by bit about your tough journey. We have been able to pray specifically and want you to know you are all still so much in our thoughts and prayers. It has been lovely to hear of the support network around you and all the love and practical help shown to you. Keep going warrior!
Lots of love from us
xxxx
February 28, 2014
Hi Neil
We don’t know each other bit I am a friend if Tim’s, who told be about your news last year, since then when Tim and I meet I like to ask how your are, tonight Tim shared with me your blog , it feels like you are on the road to recovery.
In wish you well and you have been in my prayers and will continue to be, I look forward to meeting you one day.
Best wishes and god bless
Mitch
February 27, 2014
Thanks for the update Neil. It’s good to hear that you are improving.
February 27, 2014
great news neil. positive progress is being made and thats all that matters. we all miss you at r design and look forward to seeing you again soon. may you keep improving and regaining functions such as good sleep, eating and being able to exercise the mind.
all the best
nick