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.

Hi guys,

Again it’s been a while since I wrote any update on my progress and it’s now been 6 weeks today since my last operation. So what’s been going on?

After the operation I did make a far quicker recovery from an energy point of view than I had made from the previous operations, as I was given high carbohydrate drinks to take 12 and 5 hours before the operation and these really made a big difference to my quick recovery from the anaesthetic. I was also released from hospital as I mentioned before only 3 days after the operation.

Since my release my progress has been pretty slow, my energy levels have been a lot better and I have been able to do far more with my days.  My swallow has also been made worst from the operation and my swallow is taking a lot longer to make any improvements. I’m currently still having most of my food and drugs via my stomach tube. I have had another Videofluoroscopy which has shown that my swallow is fairly safe, meaning its going down the correct place in my throat, but it doesn’t mean swallowing any liquid or food is easy or straightforward, so this hopefully in time will get better.

As for my neck itself, the external scars again have healed very well, but internally my neck is still pretty sore and the skin is a lot tighter than before, but this does slowly improve over time. With my hearing, the Baha hearing aid operation was put on hold since the last op, but hopefully this might get back on track soon.

I might still have to have further treatment to tackle any leftover cells but this won’t be as invasive as the radiotherapy and could possibly only involve injections. I have a appointment and MRI scan this week and so hopefully might out further info. I have found it hard this time to have gone from making such good progress before the operation, to having been knocked back a few steps after operation and having to go through the slow recovery progress again. But again I have had my great family and many good friends around to support me and kept me going to this time.

We are now as a family are all off for the summer holidays and we go away camping at New Wine conference for a week with 12,000 other families in Somerset and then staying in a hotel for another week with another family in Devon, so we’re all looking forward to this break together. My plans are then to try to get back to some sort of work.

So overall please continue to pray that my swallow improves so that I can start to eat normally again and that I can get back to working soon and that I will find suitable work that I can slowly get back into action and that I can kept on bing focused to getting better and back to work.

Thanks again for all your prayers and support at this time.

Man of steel for a third time, but this time only 26 metal staples and now OUT of hospital!

Man of Steel 3rd time

After my perky wake up on Tuesday, Sue visited again with mum on Wednesday to visit a less perky me. Thursday dad came along with my big sister Claire and her husband Noel from Ireland and I was starting to feel more myself.

Thursday with dad and sister Claire

It’s now Friday evening and I’ve been told to go home!!!!

Keith and Maurice came to visit and I was told I could come home, so they packed me up and Maurice bought me home on the train before the evening rush hour and Keith waited on the ward to collect my drugs to bring home.

As for my body and the operation, I’m so thankful  and grateful to the medial team who have managed to remove all the new growth whilst not causing too much further damage to my neck. I do seem to have a bit a of odd smile as one of the nerve that controls my mouth has been damaged, my swallowing is a little bit worst, but hopefully this is improve as some of the swelling does down in my neck, but on the whole I have come through this new operations without too much further damage or changes to body and although tried at the moment, its doesn’t feel as bad as it did first time around.

I’m now enjoying being at home and just being thankful and grateful for all the love, support and prayers at this time for all of you.

Thanks Neil

Hello to all you Neil watchers. Now let’s see if I can remember how to do this! As many of you have picked up from Neil’s last blog we found out about 3 weeks ago that a scan had shown up 2 new lumps in the neck, in the same region as the tumour that was taken out in November. As you can imagine this was a real blow for us all, particularly as Neil was making such good progress and beginning to look at returning to work.

He has had the operation today, not as long as before, but still 6 hours, so long enough. It seems to have gone really well. Although he is in ICU, this is likely to only be for tonight. He is bright and perky, he even phoned home at 6.30 and was able to speak to the children. I have been able to see him tonight and he his much more his usual cheerful self, which is a great relief. His arm is still working and apart from a bit of a wonky smile everything else appears to be working normally. It’s still early days, but the consultant can’t see any reason why his recovery shouldn’t be quite quick. I’m not sure how long he will be in hospital, but hopefully only  a few days.

So, thanks again go to everyone who is supporting us and in particular all those who have been fasting and praying. A victory for God I’d say! I’m a bit shattered and blogging on the train on the way home from the hospital, looking forward to a better nights sleep. Will blog again soon.

Love Sue x

It’s now June and steady progress has been made and I have been thinking about working again, as my strength and fitness has been improving. I have been back in contact with may old friends and colleagues to see if there was any work I could help them with and I had a very positive response and even had to turn down a couple of days work as I had hospital appointments and then it was the half term holiday break and we as a family joined the Heath family for a couple of days break down in Wadebridge, Cornwall. This was good time away together cycling and walking and laughing with each other.

But quite a lot can happen in a month. I mentioned earlier that I had a couple of hospital appointments and one of these was an MRI scan, which unfortunately has raised some issues that need to be sorted and I will now need to have a further operation which will be taking place on Tuesday 10 June.

This has been a very hard issue to come to terms with and I can’t say I’m happy about this, but it needs to be done, it is also gonna knock me back quite a bit from the progress I had already been making in trying to getting back to work and some sort of normal family life. It also doesn’t help that Dan in the middle of his A level exams and Sophy is in the middle of her GCSEs at the moment and Sue is in the middle of getting 30 school reports for the class and Amy has done any test this year and is back in normal lessons. So please continue to prayer for all f us at this time and I will hopefully update you again in the next week or so.

Again I’ve had the support and prayers of so many friends. Thank you as this has helped get us as a family this far.

Thanks Neil