N3il’s Blog

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

I’m just sitting in the garden on a May afternoon writing this latest blog as it’s again taken a while to update on progress, 6 weeks in fact since I putting some words down and since my last ear operation and I’ve been quite surprised by how much this latest operation has knocked me back especially in getting my energy levels back to where they were before this operation, but I do feel I’m slowly getting there.

The scar has now healed up very well and as you can see from the photo I am now the proud new wearer of my old goatee beard which was banished back in November when I had my main operation and for the radiotherapy, but I’m glad my facal hair is now back in the important places. I still have a smooth cheek above my left jaw where hair still isn’t grown back yet as the radio therapy caused all my facal hair to stop growing, but hopefully this will all come back over the coming months.

I’m now completely deaf in my left ear and the last operation completely closed the left ear channel and it now looks like a tummy button in the ear, but my inner ear is still working well, it’s just it can’t hear through the skin. I have now been for a couple of visits to the hearing centre at St Thomas hospital and I’m going again this Wednesday to get the final go ahead to have a Baha (www.cochlear.co.uk) Bone Conduction Implant hearing aid fitted, which will involve a small local operation to screw in a special permanent attachment that I can then attached the Baha hearing aid to this. I currently have a test one on loan which straps on via a head band which works remarkably well and enables me to hear especial when in a noise place. So I’m looking forward to getting at least one thing sorted so.

As for eating, I’m still on a mainly liquid diet which means having 2 milkshakes for breakfast, then 500ml of feed via the stomach tube for lunch, then 1-2 more shakes for dinner, but I am slowly adding proper food to my diet. So for breakfast I sometimes have 1/2 to whole Weetabix with milk and for lunch sometimes some soup and then in the evening I am trying to join the rest of the family for dinner and I am trying to eat a small portion of what they are eating, so pasta and rice dishes are good, and then sometimes followed by a bit of pudding.  But after saying all this I am still finding it pretty difficult to easy swallow most of this other food, as I have to chew it down to a pulp and wash it down with a glass sip of water. But slowly, slowly, one step at a time everyone else is telling me this is improving, but for me in the mist of it all, doesn’t always feel that way. The plan now with my medical team is that I come off the tube feeding by the end of July and that I concentrate on strengthening the muscles at the base of my tongue and getting my swallowing working as good as it can. Then hopefully I can start eating normally, which is my hope and dream of eating food that I love again normally and in a way I enjoy eating again.

I’m now trying to get out for a walk most days to get my energy levels back and I have also started to drink tea again as we have often ended up having cup of tea in various tea shops all around Kent. My days at home are often varied and I’m getting more mobile I’m starting to pretty bored and need to find new things to keep myself busy, which isn’t always easy and its hard to keep focused on getting better and getting back to full time work.

Work wise, I’m now at the stage where I need to start thinking about work or at least seeing what is out there, as I haven’t earn anything now for 6 months and we can honestly say that someone out there is looking after us as our bank accounts still look ok and we haven’t had any financial issues over these months. We can only say that our God is there looking after us all the way, but we are now aware I do now need to start doing something. I’m still don’t have the energy levels to do a full days work without getting over tried and even if I could get the work I’m not sure if I could concentrate for a whole day at the moment, so I’m still trying small projects for myself at home and looking for other small projects to do from home.  So if anyone has anything I could do then please let me know, this could be artwork, small design projects, websites, any IT issues with any Apple products, i.e. computers iPads, iPhone etc. then please let me know. My updated portfolio website is nearly finished at neiljeremy.com which gives an idea of some of the things i have done in the pass.

Thanks again for all the support, prayers that so many friends and family have given us and if you want things to continue to pray for its that physically my swallow will return to some sort of normality and that I can get back to feeling ready to work normally and that I can find work some work to do with people who will understand my current limitations. Hopefully next time I write I can give you all so good progress reports.  Thanks again Neil