N3il's Blog

Summer is nearly over and the temperature has already started to drop, but we have had a good summer it’s also been a while since I updated my progress, so here we go.

We as a family have had a good summer as I have been together with Sue and the kids for the whole school holidays and I’ve loved having them around, or a least most of them as Dan has hardly been around due to a busy social schedule, but more of these later.

As a family we camped at New Wine a Christian conference for a week with 12,000 other people, where we did enjoy spending time catching up with many old friends. I managed to cope and adapt to the camping life without any issue, I just found I had to take time out to reflex and sleep when I felt tired.

For our second week we went down to the Manor House Sports Hotel in Oakhampton, Devon, with friends the Heath family, who kept us all busy and entertained with the many sports and craft opportunities. The hotel was a full board and the sports and crafts catered for all our needs and I ending making a wooden door number for the front of our house and a snail jigsaw puzzle from a piece of flat wood, bring out my creative skills.

Dan has had a great summer after finishing Sixth form as he had planned 7 holidays in 6 different places, these being Zante in Greece with school friends, the Isle of White with church friends. New Wine with us, the Manor House Hotel with the Heath family, then Soul Survivor with his sisters and the rest of the church youth group and lastly to Isle of White again with Urban Saints youth group from which he arrives back this week.

Whilst all the kids were away together at Soul Survivor, Sue and I managed to get 2 nights away at a very posh Spa Hotel called Champneys in Liphook, Surrey. When we arrived we was upgraded to the ‘George Best’ suite, which was a large suite with sofas, TV’s and a very large bed. We both had massages and used their bike to cycle around the beautiful large grounds and relaxed in the pool.

The summer was also full of exam results for both Dan and Sophy. Dan had to return for a night during Soul Survivor to get his 4x A Level results which we have to say were very good as he got A*, B, B, C, which are the results he needed to get his first choice place at Southampton University to Study MORSE (Math, operational research, statistics and economics). So we will now be taking off Uni in the third week of September, which again will be a big change for us all. Sophy also got her GCSE result last week and again she did very well getting 2x A, 8x B, 2x Cs =12 GSCEs also meaning she has got her place at her current school to study her 4 A Levels which will include Maths, Physics, Art and Psychology as well as a general studies course. As parents we are now very proud of both them and their achievements this year, which now allows them both to do the things they wanted to do.

As for my progress, I have made some good progress over the summer starting with feeding. I made the decision before New Wine that I would try to start drinking my shakes rather that putting then all though my stomach tube as it would be far easy to do whilst camping, this has since gone very well to the pout where this week my support team have suggested to also try to come off the other feed I was using and go totally over to the shakes, which I am currently trying to do.

As for eating proper food, at the Spa hotel I had my first taste of food since the last operation and I had my first 3 course meal, starting with soup, then risotto and finishing with ice cream, admittedly it was very small portions but it was food and I am trying to make slow progress each day. My swallow is still not great but its improving, it will probably never be back to normal, but as I eat more, hopefully my swallow muscles with get stronger and I will be able to eat more normally. Again my support team are encouraging me to eat more and to re-learn these eating and swallowing skills that I’ve lost since the operations and radiotherapy.

The fitting of a Baha hearing aid has been on hold since the last operation, so I’m still half deaf and my voice is still very huskie and weak and I do find it hard to talk to others in busy/noisy environments. This probaly again won’t get any better without other medical help and both these issues will need to be discussed at my next appointment.

My skin and the scar on my neck have healed very well, but the muscles in my neck and left shoulder still give me a bit of a problem and get a bit sore when I’m using it or sitting on an upright seat working and this is mainly down to how my posture which has changed since the operations.

Since getting back from holiday I have had both a CT and PET scan, but won’t be getting the results of these till I get another hospital appointment with a consultant, which I’m currently waiting for.

Other good news is about work. 2 weeks ago I had 2 days paid freelance work that I did from home from an old colleague and next week I have 3 and half days more work with some other old friends at one of my old design agencies that I worked at a couple of years ago. This will mean travelling up to Euston each day and working in their office for the day, so I will have to manage my energy levels, which have been improving, but still have away to go. But hopeful I will be able to cope with the workload for the week, even if I am tired by the end of the week. It is a start back to work but also I know I need to get back slowly and even 2-3 days work each week will start to get me back to some sort of normality.

Lastly I’ve almost had to buy another new wardrobe as my weight is now below 12 stone, the lightness I can ever remember being since my teenage years. So the summer has been pretty positive and we’re seen some good progress and hopefully this is only the start to life getting back to some sort of normality and again want to thank the many friends who we have caught up with over the summer who have been to encouraging and supportive of us as a family.