N3il’s Blog

Our last post was just before Christmas and we are now 2 weeks into January and its been hard to find the motivation to write something down,  so now here it is and we have a fair bit to catch up on.

We spent Christmas at my parents in Suffolk and had a great relaxing time away for a couple of days and since then we have started a new year. On Monday 30 December I had my first radiotherapy session, this was the first of 30 sessions which will happen 5 days a week for 6 weeks.

We are now nearly 1/3 of the way through having had 9 sessions up to today 9 January and so far they are ok. All the sessions are at various times each day and all but one session is at Guys hospital. Each session involves laying on a platform with my head tightly held down. then laying still for 20-25 minutes. I don’t feel any effects during these times, but as the the sessions go on the side effects are increasing. with mainly my mouth getting dry and further difficulty with swallowing, amongst other things. Hopefully these next 4 weeks will fly by.

After being on antibiotics before Christmas I have also been on them in the new year as I have had cold, which has made sleeping an issue, as if I sleep with my month open, my mouth becomes totally dry and I wake up, but I couldn’t breath through my nose as my nose was blocked by the cold, so I’ve had a no win situation and have only had brief 1-2 hour periods of sleep, now for weeks,

I am still getting all my food via the NG (Nasal Gastric) tube in my nose, which is what came out the week before Christmas and was the beginning of my 6 day hospital stay. And  again on Monday it came out, requiring us to  spend 4 hours in A& E getting it refitted.  The tube has been coming out when I am coughing to clear the mucus in my throat. Unfortunately it has just happened again tonight Thursday 9 January, but as I’m back up the Guys in the morning, they will refit it for me there.

Sue and the kids have all been back at school this week, so it has taken a bit of getting used to being at home on my own.  Fortunately, again I have had the support of my amazing friends from the church who have been popping around to see me,  well as  travelling up with me to the hospital for my appointments and others giving both of us a lifts to and from the station.  We have again totally appreciated this support, thanks guys.

Things I’m struggling with at the moment and things for anyone to be praying for at this time are: Sleep, which is mainly down to the cold and hopefully this is slowly improving, NG tube,  that it stays in and that I might be able to control the coughing, Emotionally, it’s tough to keep myself positive and motivated and I have my good and bad days.

So hopefully this should fill you in whats been going on and if you value prayer like I do, this should give you things things to keep praying for, Thanks again. Neil & Sue

Wishing you all Christmas Greetings
and a Happy New Year from the Jeremy’s

To all our family and friends.

After being a bit distracted this last month with hospitals, we just haven’t been able to get around to sorting out Christmas cards, so this year we are resorting to sending out greetings via this blog.

Fortunately on Monday the doctors were happy that any infection that had caused me problems last week had cleared up with the antibiotics and so I was released from hospital yesterday (Monday). We are now looking forward to heading up to my parents in Ipswich for a couple of days over Christmas.

Please continue to pray for us all as my radiotherapy starts on Monday 30 December for 5 days a week for 6 weeks and then it will be a month after that before life will start to get back to some sort of normaility. So thanks again for all your support and prayers at the time.  We will continue to keep you updated.

Have a Happy Christmas and a peaceful and healthy New Year.

Love Neil, Sue, Dan, Sophy and Amy

I was taken by ambulance into hospital last Tuesday 17 December after  throwing up and then becoming very confused. After spending  a couple of hours in emergency at the Pru hospital in orpington. I was later admitted Tuesday evening as I had some sort of infection in my head and they wasn’t sure what it was do to the surgery I had recently had.

Today is Sunday 22 December and I am still in hospital  as they wanted to make sure I finished the 5 day course of antibiotics and so hopefully I will be going home tomorrow.

The last 5 days have been tough as for 4 of theses days, I’ve had my own room and  have been spending alot of time on your own and when your not really sure what’s going on or how long your gonna to be in for. This  I thing has been partly done to the fact that I have had 2 different hospitals dealing with me and no-one has really known all the facts and details and which is why I thing I’ve been in limbo land. Hopefully tomorrow this will all be over.

So please pray that this is the case and that any infection is cleared up And next week on Monday 30 December i will be starting my radiotherapy for 6 weeks. Sue is gonna to do a blog soon to fill in more of the details of the last week.

I’m at it again, updating my blogging skills after a short break.

Neil is now home, hooray! He came out on Wednesday after a very long wait for medication. It is much better for him and us now he is home, if a little daunting. I have added nursing to my skill set and the medical staff seem to think I am doing a pretty good job so far. It is a bit worrying that nurses take a 3 year degree to become qualified, yet overnight I am expected to do the same job! It is taking us a bit of time to settle into the new routine, but we are getting there. My school have been brilliant, giving me the end of last week off and to the end of this week too. Neil has been very tired, but overall is sleeping better and not in too much pain. Although he is taking sips of water, swallowing is still a real challenge. You don’t realise how much we take for granted simple things, like being able to swallow saliva, until you can’t do it.

With the help of our amazing friends, we were even able to give Dan an eighteenth birthday party on Saturday at home. Neil managed to stay downstairs for a couple of hours, until he got too tired and retired to bed.

One of the downsides of being at home is that we now have to attend outpatient appointments, which are held at Guy’s and St Thomas’s. This means that we have to travel up to town for appointments, which is not great when you are recovering from major surgery, can’t swallow and are being tube fed. We spent the whole of Monday doing just this, seeing the speech therapist, special care dental team and then the eye specialist at St Thomas’s. It was an awful day, not only because we spent over 7 hours at appointments and travelling, but mainly because when we saw the dental team, who were checking the teeth prior to radio therapy, the consultant said he needed 3 of his back teeth out and then proceeded to do it there and then! I think Neil was in shock for the rest of the afternoon. It was just awful, feeling sore and with a mouthful of blood, we then had to make our way over to St Thomas’s to see the eye specalist, travel back during rush hour, eventually returning home at 7pm. What made it even worse was the fact that one of the teeth they took out, he had just spent £200 on getting a ‘super’ filling, only the week before his surgery! Grrrrrrr!!

Something to pray about is Neil’s left eye. The surgery has left him with a large blind spot in this left eye, which makes focussing tricky. The consultant thinks that over time the brain should learnt to compensate for this, so that it doesn’t’ notice the blind spot. All those who have been praying, please pray that this will happen. Also, pray that the swallowing will get stronger so he will be able to tolerate some food over the coming weeks. It looks like he will continue to be fed by tube for a further few weeks yet.

Well, that’s it for now. Once again thanks for all your support.
Sue & Neil

Hi guys
Just a quick update here on Tuesday 3 December, to let you all know that I have been told I can go home tomorrow, to sleep in my bed, watch my TV and but still eat hospital food!

But this is only because I’m still Have a fair way to go in learning to eat and drink again and there is still a whole physical programme to work on to get my body working fully again. But at least it will be at home.

It’s been great to see more do friends today in hospital and I will be great to more of you when I’m home. I also know that after Christmas I will need to start a 6 weeks course of radio therapy, so I just going to enjoy Christmas with our families and the great community of friends around us who have been a great source of food and blessed to us and my family and hopefully start to enjoy the pleasures of eating and drinking nice stuff over Christmas.

Hopefully see you all soon.
Neil