Update May 2014

12 May

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

Neil 12May14

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