N3il's Blog

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