N3il’s Blog

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

This Saturday, 15 February was my 48th birthday.

The kids were all away for the weekend, the first time ever all 3 have been away together and how nice it would have been to have a great day out, eating, theatre etc! But to be honest I was just not up to doing anything, although we have seen slow improvements this week, I just didn’t have the energy to do anything. It was going to be a very quiet day.  So after trying to catch up on a bit of sleep in the morning,  Sue woke me up and presented me with a pile of cards.

That’s when the day got better!

As I started on opening the cards, there seemed to be more than I would normally expect, which would usually be about 6, but this pile had a least 20! The usual family cards were there, but most of them were from friends who wouldn’t normally know it was birthday anyway. Each card contained words to encourage me and another bit of paper which had a value of its own (money).

I must say I was totally blown away and wasn’t quite sure what was going on. But it certainly brightened up what was promising to be a quiet day. By the time I got dressed and went downstairs there were more cards through the letterbox and this trend continued through the whole day. By time we went to bed I had received 48 cards like this and all of these cards were from friends in the ‘Band of Brothers’.  It was like a constant shower of blessing throughout the day.

The ‘Band of Brothers’ is a group of 90+ men at the church and for the last 5 years I have been involved in running this group of men. They have been an amazing encouragement to me and the family during the course of my illness. It is this group of guys who have travelled daily with me for my radiotherapy sessions to Guys. It was Maurice Clarke who organised this day of blessings, as a way to bless and encourage me during my time of recovery. Thank you guys it has done the job it intended and it definitely made our quiet day one to remember.

Thanks
Neil

Time has flown by since Christmas as probably most of you will also know and for me, the 6 weeks of radiotherapy has gone by very quickly and it’s now been a week since the need to travel up to Guys hospital 5 days a week.

Over the 6 weeks of treatment although I didn’t have many side effects at first, this did change after 2 weeks when it became a lot harder to swallow and clear my throat of salvia. My voice had almost disappeared as it became too painfully to speak and sleep became an item in short supply or only came in short periods of an hour or lest before I had to either clear my throat and noise of salvia or wet my mouth because is was so dry. Lastly I just became tried and just didn’t have any energy to do anything.

Because of all the physical side effects, just to do simply thing every day was hard work and treatment days were often worst and long days as firstly, getting up and administering my list of drugs and linking my food supply for the day and the getting out the house could take 2 hours. The times of the treatments varied from day to day, some days started at 9am and some at 4pm, 3 days each week was just a treatments, so we could be home in 3 hours, but the other 2 days also had other appointments, such as a weekly blood test and treatment reviews with the doctors and these days could be 5-6 hours long and just added to my tiredness.

Also at each treatment I had to wear a very tight fitting mesh mask, which held my head in the same place, but trying to breath with this on for 25 minutes when your nose is blocked or you was feeling you needed to cough was a real ordeal each day and I would also count down the minutes of each session.

I did have a great team of guys around me who have helped me get through these last few weeks, as one guy come and travel up with me for the treatment and then someone else would then picked us both up from my house and take us to and from the train station. I just couldn’t have done it without them and getting home after each treatment was such an ordeal as I just didn’t feel well. So many thanks to Keith, Maurice, Dennis, Dave, Martin and Stephen who came up with me and also again to Keith, Angela, Maurice, Shelia, Dave, Mike and Tim who did a great taxi service and guys I am so grateful that  you have helped me through this even if I didn’t speak to you on the day, other than hand signals! Thanks guys

So what now. I have been told the side effect will take unto 2 weeks to peak and unto 6 weeks for me to really get back to some normality. My swallowing and my speech are slowly improving, but currently I’m still being feed by the nose tube, but on Friday 27 Feb I am having a new stomach tube fitting and then the nose tube and come out, I will need to be a Guys for 2.5 days to get this fitting but thats long jet to make sure its working ok before I come home. Having this tube fitted will then make it easier to get me to learn to swallow safely and then get back to eating food normally. I also have to have a small day operation on my left ear and the main operation didn’t quite do a finished job, this will mean going in for a day operation be on Thursday 27 March.

So this is my news and thanks again for all your love, support and prayers and hopefully at point I will be able to talk and eat some proper food together with many of you my friends.