N3il's Blog

Blog Update 13 August 2015

It’s now nearly 6 weeks since my last small operation, which I didn’t really explain about much in my last blog post. So I’ll just briefly explain. In Feburary’s operation which was to attached an titanium abutment into my skull to create a fixing point on my head for a BAHA (bone attached hearing aid) hearing aid. I also had an injection into my left vocal cord to hopefully improve the volume of my voice, as my voice has been pretty quiet since all my operations and treatments last year, as a nerve was cut in one of the operations meaning I have lost the use of a number of neck and throat muscles which controlled my voice and my swallowing, which in turn means only one of my two vocal cords now moves, leaving a gap, which in turn didn’t give me enough breath to talk very loudly at all.

The February operation went a long way to improving my voice, but the speech therapist felt it could be improved further, so this is what the last operation was about and I can say that after I had rested my voice for 48 hours, there was an improvement again. I’m still not back to a normal level of volume, but this now is as good as it gets and I’m happy as I now have enough breath to even sing, a bit, but it’s not quite the angelic tones I was able to output to years ago, but far better than it’s been.

Life is now at a new normal and as good as it gets. Work has been a bit quiet in July and we’ve had a 2 week family holiday at the end of July and first week of August. Our first week was our 11th year camping at New Wine christian summer conference at the Royal Bath and West Showground at Shepton Mallet, Somerset, camping with 12,000 other people and churches. The weather wasn’t great with heavy rain meaning we started off the week pretty wet! But the weather didn’t spoil our week and we had great fun with lots of old and new friends. Our 3 kids spent the week working in on the youth teams looking after groups on 16-18 7-8 years olds. So although they had a busy week they loved every minute of it.

Our second week was far more luxurious one, as we drove on to St Brides, Pembrokeshire in south Wales to stay with another family the Heaths, in a very nice cottage. Again the weather was mixed but that didn’t stop us having a great week.

Now we’re backing and getting use to normal life again. The kids are off again next week to Soul Survivor. Dan then has a further 2 holidays before his back down to Southampton at the end of September for his second year at uni.

Sue and the girls return to school at the start of September and work wise, I am then booked from the beginning of September for a potentially extended contract in a well know global brands in-house design apartment. Which I’m looking forward to.

That’s our news for now and hopefully we looking forward to a fairly non-eventful autumn. Thanks again for all your love, prayers and support.

Neil

Hi guys. this is not a new blog posting, it’s just my blog site has been down and out of action for a couple of weeks. But it’s has now been restored from my last back up in May, which didn’t have this last post from July on it, so it’s all old News, not new News, is just I’ve re-published this last blog post again to keep the blog site up to date. I will give you all the latest update soon.

Thanks Neil
August 2015

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Just to give you all a quick up date on todays events.

I arrived at Guys Hospital at London Bridge at 9am, but didn’t get into theatre till 1.30pm, so a long wait! But was only in Theatre about 30 mins and I was back on the ward by 3.30pm.

Everything went well and feeling good, but I’m now of a forced & strict NO TALKING routine for the next 48 hours. So not allow to speak, much to my families relief. I’m not really going to know how successfully this current operation has been until Sunday onwards. So watch this space to hear my voice!

My friend Pete Doorey came up to the ward just as I arrived on it and stayed till there till they let me home at 7.30pm. Fortunately London bridge station is only 5 mins walk from the ward and the fast train was only 18 minutes to Orpington and my lovely wife then picked us up from the station.

So I’m now home and feeling pretty good and have now adopted a new way of communicating with everyone! My mac has the ability to convert type into speech, so I type what I want to say and the computer speaks it out loud! This is fun and I can speak in many different voices and accents. Sue is already sick on my new voice!!! But I’m enjoying my new computer voice as it’s far better than my pre op voice, as I’ve been so use to have such a quiet and weak voice and I’m hoping, come Sunday the strength and volume of my voice will be improved! Watch this space as I might even record a message with my new voice in a blog to everyone!

Thanks again for your prayers and support today!

Blog update 6 May 2015

Another long over due update and lots has happen since February’s operations. One to improve the volume of my voice and the other to attached an titanium abutment into my skull to create a fixing point on my head for a BAHA (bone attached hearing aid) hearing aid. As I said in my previous post.

All went well on the day and I woke up feeling pretty good and not feeling too tired or sleepy from the anaesthetic, but I was talking a lot louder straightaway. But as I found out later, I should have been resting my voice for a couple of days after the operation. But no medical staff had told be this. A speech therapist should have come a see me whilst I was in hospital, but it took another 4 weeks for this to happen. After emailing my consultant after 4 weeks one morning not speaking to anyone about it. I actually got an appointment with the principle speech therapist on the same day. She was great and then told me that I should have rested my voice for a couple of days after the operation. Hindsight is a great thing! I then had 4 speech therapy session over 4 weeks with her which did really help me to understand how I could help my voice through different exercises. After the 4 sessions it was then decided that although the injection had improved my voice, their was still a gap in my throat between my good vocal cord on the right and the one that had stopped working on my left, which in reality is only about 1mm gap, but I have been told that I could still have another injection to push out the non working vocal cord to meet the good vocal cord better then hopefully I would get another increase in volume, which I definitely noticed after the first operation.

The BAHA abutment did take a few weeks for the settle down and for the skins around it to start to heal which did mean weekly visited to see the nurse, but after 5 weeks it was looking good. I was then booked in to get the actual BAHA hearing aid, which did take another 6 weeks for the appointment, but those finally happened on 27 April. So after getting my bonic ear clip on last week it’s been great and I have now got back my full hearing. The sound isn’t quite the same as my other ear, but with both ears working together I get a great surround sound, which also gives me back the ability to hear which direction sound is coming for. It has also help me in term of when I am anywhere where there is a lot of background noise and I have found even at parties I can hear well. So another thing to tick off as sorted.

At the beginning of April I had another one of my regular MRI scans to check on my neck and to see what’s going on in there and today I had an appointment with Mr Rubert Obholzer my consultant to review the scan and catch up on my progress. So Sue had the morning off school to come to Guys hospital with me. We was both feeling a bit nervous, as we had been told last summer there is still a very small trace of the tumour in my neck, but from August to December if anything it had reduced in size. So in the end it was a very positive appointment. Mr Obholzer explained a bit more about the tumour, that many people who had my sort of tumour often had small traces left, but often these are a very different sort of tissue and other people have lived with this sort of thing for 20 years with no problems. He has also booked me in to have another top up injection which will again be a general anaesthetic, as he believes this will again improve the volume of my voice, this should hopefully happen in the next 6 weeks and should only be a quick 30 minute operation. So with not great expectations for the appointment, we came away very happy.

As for everything else, eating is still slow, but improving slightly and I’ve halved the amount of shakes I’m still taking and generally my health is good and life is fairly normal. Work wise, I was a bit quiet in February, but this did pick up from March and I’ve been very busy since and I’ve had some great projects working on a Kronebourg beer and bottle packaging and an Orangina juice bottle and can packaging project for one agency for 5 weeks, which have been great projects to work on.

I must sign off now, but I once again want to thank all my family and friends for all your prayers and support as we as a family have got through this last 18 months together and we also believe that God has been watching over us and looking after us, every step of our journey. Thank you Jesus.

Just to give you all a brief operation update. Was it at 7 this morning and remember being in the theatre at 9.30am, next thing it was 12.30pm and I was fully awake in recovering and the best thing was, I was talking straightaway in sentences without having to breathe every 2-3 word. Happy I’m very very happy. They could stop me talking As I had a years talking to catch up on.

I was back up on the ward by 1.30 and feeling great, not even drowsy or in much discomfort. Throats a bit sore but only like a mild  sore throat. But who’s throat wouldn’t be sore if you had cameras and other stuff stuffed down your noise and throat.

My baha bone anchor also went well but wouldn’t get the benefits of this for another 4-6 week until the scar has healed.

But again overall very very happy. Thanks again for your prayers and support.

All has been pretty quiet on the operation front since my canceled operation in December. But I have had 2 appointments with 2 of my consultants last week.

The first last Wednesday was with Dr Mary Lei my oncologist consultant, and she was very happy with my progress and said I have made a remarkable recovery and now doesn’t want to see me for another 12 months. This was great news to hear.

Then last Friday I met with Mr Richard Oakley who is the neck and neck cancer consultant, after having to wait for 2 hours I caught up with him. First of all he commented that I was looking remarkably well considering all I have been through in the last year and he said not many people had had one of their carotid arteries removed and he was very happy with my progress to date and he doesn’t want to see me for another 6 months, especially as I’m still under another consultant Mr Rubert Obholzer who is the base of skull surgeon, who is going to sort out my next operations.

So I finished last week feeling pretty good. I’ve now come into this week with work being pretty quiet and then yesterday evening I had a call from Guy hospital, saying that they had had a cancellation this Thursday and was I available to come in and have the operations I was due in December to help improve my voice and to add a screw anchor in my skull to attached a bone anchored hearing aid. Both of which I really need to help me communicate and hear better. I would be able to get the Baha hearing aid fitted for 4-6 weeks and we have to wait for the anchor to heal and for the skin to grow ago the screw, but hopefully, the vocal operation should make a different fair quick after the operation.

I did say yes I’m happy to go ahead and this actually fits in very well, as I am quiet work-wise they have confirmed this morning and they said this should hopefully be a day case and so I should be out the same day. So watch this space for an update later in the week.

Thanks again for all your prayers and support and hopefully this will me another big step forward. I do find the weak and quiet voice a real frustration, so please pray that this op especially is successful.

Thanks Neil