N3il’s Blog

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

Time has flown by since Christmas as probably most of you will also know and for me, the 6 weeks of radiotherapy has gone by very quickly and it’s now been a week since the need to travel up to Guys hospital 5 days a week.

Over the 6 weeks of treatment although I didn’t have many side effects at first, this did change after 2 weeks when it became a lot harder to swallow and clear my throat of salvia. My voice had almost disappeared as it became too painfully to speak and sleep became an item in short supply or only came in short periods of an hour or lest before I had to either clear my throat and noise of salvia or wet my mouth because is was so dry. Lastly I just became tried and just didn’t have any energy to do anything.

Because of all the physical side effects, just to do simply thing every day was hard work and treatment days were often worst and long days as firstly, getting up and administering my list of drugs and linking my food supply for the day and the getting out the house could take 2 hours. The times of the treatments varied from day to day, some days started at 9am and some at 4pm, 3 days each week was just a treatments, so we could be home in 3 hours, but the other 2 days also had other appointments, such as a weekly blood test and treatment reviews with the doctors and these days could be 5-6 hours long and just added to my tiredness.

Also at each treatment I had to wear a very tight fitting mesh mask, which held my head in the same place, but trying to breath with this on for 25 minutes when your nose is blocked or you was feeling you needed to cough was a real ordeal each day and I would also count down the minutes of each session.

I did have a great team of guys around me who have helped me get through these last few weeks, as one guy come and travel up with me for the treatment and then someone else would then picked us both up from my house and take us to and from the train station. I just couldn’t have done it without them and getting home after each treatment was such an ordeal as I just didn’t feel well. So many thanks to Keith, Maurice, Dennis, Dave, Martin and Stephen who came up with me and also again to Keith, Angela, Maurice, Shelia, Dave, Mike and Tim who did a great taxi service and guys I am so grateful that  you have helped me through this even if I didn’t speak to you on the day, other than hand signals! Thanks guys

So what now. I have been told the side effect will take unto 2 weeks to peak and unto 6 weeks for me to really get back to some normality. My swallowing and my speech are slowly improving, but currently I’m still being feed by the nose tube, but on Friday 27 Feb I am having a new stomach tube fitting and then the nose tube and come out, I will need to be a Guys for 2.5 days to get this fitting but thats long jet to make sure its working ok before I come home. Having this tube fitted will then make it easier to get me to learn to swallow safely and then get back to eating food normally. I also have to have a small day operation on my left ear and the main operation didn’t quite do a finished job, this will mean going in for a day operation be on Thursday 27 March.

So this is my news and thanks again for all your love, support and prayers and hopefully at point I will be able to talk and eat some proper food together with many of you my friends.

It’s been 3 weeks since my last post and I can only say that this is manly down to the fact my life has got into a daily routine, which means there hasn’t been too much to write about.

So for the last 5 weeks my working week, i.e. Mon-Fri are treatment days and then weekends are rest days to recover. My days all centre around when I administer my cocktail of drugs, which is 3 times a day, usually between 9-10am, 4-6pm and 10-11pm. Sue has been a great nurse since leaving the hospital but now she back at work, I’m doing this myself.

The radiotherapy didn’t really cause any issues for the first 3 weeks, my throat and swallow are still pretty painful and now the skin on my neck is getting redder and my neck seems to be pretty hot most of the time. My main issues I face every day is clearing my throat and mouth of salvia, which often makes me sick or makes me feel nausea especially before the next drugs are due and so I have got a lot better at managing my days with the drugs and creams and getting these in my body at the right times. I am also now started to feel very tired from the radiotherapy and spend a lot of time sleeping or dosing especially as at most I’m only getting a block of 3 hours of sleep at anyone time, this is mainly down to waking up with a very dry mouth and the salvia glands have also been effect by the surgery and now even more by the radiotherapy.

Hopefully this helps you all see whats going on and again we thank you all for your love and support and I have be fortunate that a bunch of friends have organised the lifts to and from the station and one of them has always accompanied me each day to the hospital, which has been great as generally after the radiotherapy I have felt very tired and I was good to know would get you home. Thanks Guys

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