N3il's Blog

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

It’s now Saturday and I’m sitting at home in bed with a sore head after another operation last Thursday 20 March.

So as you can see from the photo, I have more metal staples back in the side of my head and so I’m again ‘The Man of Steel’ with another 22 metal staples behind my ear, these do look far worst than they actually are and they mostly follow the previous scar line from Novembers operation only changing direction at bottom of the ear and you can see the previous scar did healed very well and this scar has healed so well. My ear is still bleeding a bit and I’m still feeling pretty sore and tender on this side of my head, but generally the operation has been far less invasive than November’s operation was.

This operation has come as a bit of a set back, but was needed to trying to repair and reconnect my inner ear with my outer ear to restore the hearing in this ear, this was partly due to November operation and further damaged by the radiotherapy. If I didn’t have this operation my ear would have been prone to regular infections. Unfortunately the issue couldn’t be fixed and they had to close off the ear channel, which now means I have lost the normal hearing in this ear, but over the next couple of months I should be able to get a Baha bone connected hearing aid which will then hopefully give me back pretty good hearing in this ear. I’m now slowly getting over the operation and my ear is still sore and tender and blood is still coming out a bit from my ear, but hopefully this will all improve over the next couple of days. The staples will be taken out next Friday and hopefully the ear will be healing well by then.

Over the next few weeks starting Monday, I have a couple of appointments to assess my hearing and for general reviews with my treatment. So apart from my ear, the rest of me is still slowly improving, I’m still feeding via the stomach tube, but I’m also taking far from drinks and thicker soups and hopefully in the next couple of weeks I might be able to start eating some proper food again, can’t wait! The thick saliva has improved massively and I now seem to have a dry mouth most of the time. So that me for now.

On a technical note, there has been a issue with the email notifications for those who have subscribed to my blog as it hasn’t been working. Hopefully the issue is now fixed.

Thanks again for your support.

Neil

It’s now nearly 6 week since the radiotherapy and  nearly 4 months since the operation and 3 weeks since I was last in Guys having the stomach tube fitted.

The stomach tube, which I can report has been a great improvement from the nose tube I’ve had for the previous 3 months and most other areas have also improved. I am now drinking and swallowing far more and am daily having milkshakes and soup the proper way down my throat. The thick saliva has gone down massively, although my mouth is far drier, but I can cope better with this because I just have a drink. My energy levels are improving but I still have a way to go here, but I’m trying to get out for walk daily and fresh air which all helps especially as the weather has been far brighter. I also had another appointment 2 weeks ago with the eye specialist who re-tested by eyes and felt the left eye had improved better that he was expecting it to, although he didn’t feel it would improve much further, but again positive news. I then had my eyes re-tested at the opticians as I felt my prescription had changed and it has, but the left eye was actually stronger than it was before not weaker. This was another surprise. I’ve also been back behind the wheel of car, which has given me back some of the freedom I have been been reliant on others for recently.

I came up to Guys today for my 6 weeks treatment review with the consultant radiologist, who is very happy with my progress and feels I have progressed far quicker that they was expecting. This was positive and encouraging news. I’m also here today as I’m being admitted again for a small operation on my ear tomorrow (Thursday). This is to try and repair the connection of the inner ear to the outer ear, which didn’t work very well when I had the main operation back in November and could have been further damaged by the radiotherapy. There are 2 possible outcomes to the operation. One is they are able to fix it and I should be able to hear again normally or they can repair it and I will lose the normal hearing in this ear, but can then have a bone connected hearing aid. So one way or other I will be able to hear in my left ear, but I’m hoping and praying that they will be able to correct the ear and I will be able to hear normally. So if  want something to pray for it would be my ear operation this week.

We now come to the end of my update and I’ve come a long way in my journey but there is light at the end of the tunnel, thanks again for all your prayers and support and please contunuie to pray for my full recovering. Please also prayer for Sue who has been such a rock to me over these pass few months and for our teenagers Dan, Sophy and Amy, who have all just had to get on with life whilst having a busy mum and a dad being around but not able to really particate in normally family life, happyerly they can see this is slowly getting back to some sort or normality.

Thanks Neil

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