N3il’s Blog

Movember has kicked off this week and my moustache has started to establish itself on my face although my chin has been cold this week without any of its normal coverings! Already have been given £50 of sponsorship, so you want to sponsor me go to http://mobro.co/neiljeremy1.

Earlier in the week I had a letter confirming the date of Thursday 21 November as the date for the main operation, which will take place at Guys hospital and yesterday 8 October I met up with Mr Obholzer to to review the results from the balloon occlusion test I had on the 24 October and the results as I have already mentioned on previous blogs were good. But he is looking at the possibility of having another procedure similar to the balloon occlusion test, that would block off some of the arteries feeding the tumour before the main operation, but this would need to be done a couple of days before 21. So I wouldn’t know about this till nearer the time.

He did go over some of the issues, one being the small risk of a stroke which has been reduced due to the balloon test and they other being that there is a strong possibility that they will have to sacrifice the hearing in my left ear to get at the tumour. Whilst this isn’t 100% certain it is a real possibility. I’m likely to be in hospital for between a week and 2 weeks and tube feed for at least the first week and I could also have issues with swallowing and talking for a while and the nerves in the left side of my face might also be temporary damaged causing my face to be a bit lop sided, but this could hopefully get better over the next 6 months or so. So at least the family will enjoy the quiet for a time.

So whilst I’m glad to have a date for the operation and to get it over with, I can’t say that I’m looking forward to it and to the time I’ll need to get back to normality afterwards. But I do appreciate all the support and prayers so may of you have given us as a family and I also know that the results of the balloon test was so positive because of all the prayers that so many of you have made on my behalf and my faith keeps me going as I know God is looking after me.

Please continue to prayer over these next few weeks that the operation might go according to plan and that there might not be any complications during the operation and afterwards the healing might happen quickly and that the doctors might be amazed at how well everything has gone so well.

Thanks again for continuing to read this blog and supporting us as a family.

It’s now Movember along with some others friends from the Band of Brothers men’s group that I lead at St Paul’s Crofton. We will be starting to grow a moustache for Movember to raise funds and awareness for men’s health. It’s going to be a hairy journey and I want you to be part of it.

As most of you know, Movember last year was a significant time for my health, as this journey all started last November, when the design agency I was working at decided to get involved in Movember. Six guys including myself started Movember clean shaven and grew moustaches throughout the month to raise money. During the month we took photos every day of our moustaches progress. At the end of the month I was putting together these images to make a slideshow. It was at this time that I noticed that the left side of my face was bigger than the righthand side. So I checked my neck out and realised my neck was swollen under my left ear and jaw. This kick started my journey to the doctors and hospitals, which turned out to be tumour in my neck, which hopefully could be operated on before the end of Movember this year.

You can see our team at moteam.co/bandofbros-spc and if you feel as strongly as I do about changing the face of men’s health, enlist for Movember and JOIN OUR TEAM now. If you can’t join us please support our team by sponsoring our team page or sponsor me individually at mobro.co/neiljeremy1.

A moustache is the mark of a man, and today it is a symbol to spark conversations about important health issues. So guys, pledge to grow a Mo today, or ladies, join the team to support my Mo.

Find out more about why you should join me and Movember, by taking a look at THE CAUSES WE ARE FIGHTING FOR.

Thanks in advance for supporting our team and helping to change the face of men’s health.

United we Mo.

Neil

A week after getting a great result from the ‘carotid balloon occlusion test’  I am still feeling the after effects of the surgery, with the remains of a 6 inch round black bruise at the top of my left leg and still feeling a bit stiff when I walk, but this is slowly getting better and as its been half term this week and have had 2 personal chauffeurs to give me a lift to and from the station each day. Thanks Sue and Dan.

Today I have been to Guys Hospital for an appointment with Joint Endocrine & Genetic clinic. These guys will be looking to see if there are any genetic causes for the Paraganglioma tumour that I have. They are also looking into my genetic family history and will be doing tests on a blood sample. This will take about 4 months to complete. They have also asked me to take part in a research project to help them to increase understanding into the clinical and genetic features of: Phaeochromocytoma & Paraganglioma. Whilst my tumour is a Paraganglioma, this research and this might not help me, it will help the medical teams to understand more about these 2 different conditions. Phaeochromocytoma tumours are rare and only occur in 1 in 100,000 people per year and my Paraganglioma tumour is even rarer still.

So looking ahead positively, next Friday 8 November we will be meeting up with Mr Obholzer’s to review where we have got too so far and hopefully at this meeting they will be giving me a date for the main operation, which hopefully will be by the end of November. I am also feeling far more positive about the procedures that need to be done and whilst I can’t say that I am looking forward to having the operation and the time its going to take to get over the effects of the surgery. I do know they one way or other I will get through this I keep coming back to the words that a good friend Tim gave me back in September about looking beyond what I face.

These words and with the love, support and prayers of all our families and friends and knowing that my heavenly Father is watching over me every step of the way. I know I will get through these next few months and hopefully be back working in the new year.

Thanks Neil

Hi everyone

I hope you was all as impressed as I was that Sue managed to post an update on the blog yesterday whilst I was still in recovery, there’s nothing like getting the news out on the day especially when I’m not up to doing it myself, thanks Sue. I also wanted to say a big thank you to all our friends and family who have been praying and supporting us through our journey, we believe that the good results of this operation are a direct result of this support and knowing that God is in full control all the way and it’s really encouraging to know that we have this sort of support around us.

Thanks especially to friends Maurice Clarke and Mike Lacaille, Maurice took us to the station at 5.45am yesterday morning, we then missed the train as the platform changed without any announcements, which meant we was gonna be late at the hospital. So we called Maurice again and he got back out of bed and came straight over and took us straight up to Kings in his car, arriving on time. Mike then came along in the afternoon to pick us up, this was so greatly appreciated as I wasn’t feeling too good, as the scars were sore and a migrate had come on since the operation which didn’t make the journey home too good. Thanks guys.

As for the operation, Sue blogged yesterday to say the operation went very well, which it did. So I’m just gonna fill you in with some of the details. I was awake for the whole procedure with a local anaesthesia in my groin where they inserted the tubes which was still a pretty painfully experience. After the operation the surgeon talked me through what they had done and he was very happy with the results, saying that the whole procedure couldn’t have given us any better results. During the operation they temporary blocked off the left carotid artery to see if in doing so blood flow could find other routes around  my brain and they could see from the results that the blood flow was easily dispersed around the brain though other arteries. These results are positive for me, in that the risks of having a stoke during the main operation have gone down from 30% to 5%.

The main surgeon Mr Obholzer was sent the result yesterday afternoon and he will hopefully review these and set a date for main operation and I am hopefully meeting up with him again on 6 November to discuss the next steps.

So after 20 hours my groin is still tender, but I am now feeling a lot better and now just need to take it easily for 48 hours.

I hope I’m doing this properly, Neil will be amazed if I do!

Just to let all you Neil watchers know that his operation has gone really well. This feels like the first piece of good news in months! His blood vessels passed all the tests and this should be good news for the main operation. Thank you to everyone who has been praying for us today.

God is good! Sue x