riddlermarc

Well, it’s been a little bit of a strange day today - I woke up a 6.30am or so for observations etc and couldn’t get back to sleep.Time for a wash/change and a bed making session and then I had breakfast before going back to sleep for a bit before my mid-morning Radiotherapy dose.. then back for lunch lunch - yes I lead an interesting life at the moment!

Then I had another little nap and H/Sam/Chris/Lorrie/Jen came for a visit which was really good - we grabbed a wheelchair and managed to get away from the ward for an hour or so and go get a tea and some fresh air. Man it was good to see Sam again, I hadn’t seen him since last Thursday when we quickly dropped him with Jen before we had to bolt for the train. He wasn’t too fazed by it all, which is obviously a good thing but it means he is getting used to all this now which just isn’t right for a kid of his age:( We pottered around for a while then they all left, and then Mum and Gary turned up for an hour or so, so I took the opportunity to get away from the ward for another hour and get a tea with them - it is really nice to get out for a bit!

They left around 7pm or so as I was getting pretty tired so now I’m fed, watered and back on my bed listening to the new “Black Stone Cherry” album and updating this blog.
H brought down the last two series of Red Dwarf for me to watch on dvd so that should keep me going and keep my spirits up a little and I still have most of the Rambo boxed set to watch when I can dedicate some time/concentration to it!

All in all, not doing too bad - a bit tired, sickie and bored but that’s to be expected and it will get worse before it gets better apparently. A small price to pay for an extension on my life - I have no wish to shuffle off this mortal coil just yet, too many things to do and people to see

I keep thinking about my cousin Nicky in Oz, haven’t spoken to any of that side of the family in years and apparently she’s really down with the dreaded C so I want to get in contact and just say “Hi”.. It just feels a bit of a crap reason to initiate the contact, but on the other hand maybe it’s the perfect reason?

Well, the set-up session went well, I now have two new tattoos on my chest courtesy of SUHT (who can say that!) - I need them so they can line up the radiotherapy machine every time. They are just a couple of dots, but they ARE permanent.
The radiotherapy session went well and I (touch wood) don’t feel too bad as yet, early hours/days though so I will have to make sure I take it as easy as possible just in case
I’m in for four more, they don’t do radiotherapy over the weekend so I will be probably having my last session next Monday and coming home Tuesday.. another WEEK in hospital! Shocking!

Pretty tired right now so I am going to stick a Rambo dvd on the laptop and just veg, I think..

Dr Hamilton has just come round and had a chat about the next step(s) forward, seems I’m to stay in and have five doses of radiotherapy on a strip of my spine from the bottom to around halfway up (T11 I believe). That should either start today or tomorrow, I’m not really looking forward to staying in at least another five days but hey, gotta get fixed and out of here asap Will update later if/when I get some news..

Just sat in hospital, minding my own business when I happened to catch sight of my wedding ring and I had a really proud, bursting feeling in my chest.. yeah it’s a lovely looking ring but it’s not just that- it is what it symbolises that makes the difference.
People said before we were married that “it’s just a piece of paper, nothing has to change” but IMHO it has and everything feels different, a little tighter all over perhaps.
I love my wife, and I love to tell people ” this is my wife, Hayley”.

Enough of the mushy stuff, I’m going to stick some Metal on my headphones at a loud volume and do some surfing!

They AREN’T going to plump for surgery as the neurosurgeons think the spacing of the three lesions covers too much ground so it’s not viable. Radiotherapy is going to be the way forward, I have to wait to see Dr Hamilton tomorrow morning to find out what the plan of attack is but probably something like I had on my head (ten days of average doses of twelve minutes a time).
They are fairly confident it will at least halt, if not shrink the lesions and give me most, if not all of my leg mobility back. They are pleased with my current leg strength and how I am responding to the steroids up to now.
I have a catheter (wee bag) in at the moment as the spine problem is refusing to acknowledge when I have to have a wee, they don’t know if this will change after I have the radiotherapy.. I may have to have a bag strapped to my leg permanently but as long as I don’t wear jeans quite as tight as I used to I should be fine… more positive than negative but they just can’t be sure and it’s a small price to pay for a life extension.

I feel a little more confident after what has happened the last few days, I don’t think I’m going to die any time soon so that is a definite bonus!

I had a bedside visit this morning from Dr Simmons’ Registrar (or was it SHO/HOSO, I can never remember what they are!), she checked me over and was satisfied with what was going on. It seems she is pressing the neurosurgeons today for an answer as to whether they think surgery is the way forward, if it is too risky etc. The choices going forward are:
1 - Surgery to remove the main, middle lesion and then targeted radiation on all of the lesions.
2 - If surgery is too complicated/dangerous then radiotherapy alone is the way to go. Problem with this is that because the spinal cord involved they have to be careful how much radiation they can give me..

So, a little more waiting but the lady who saw me earlier said things will be done asap and definitely this week.. I am pretty scared to be honest, never been the bravest for things like this but the words “surgery” and “spine” should never be used in the same sentence!

Will let you know what’s going on as/when I hear anything

.. had the bods round this morning with the results of my MRI scan last night - seems there are three “lesions” (tumours) on my spine, one at the top, bottom and middle (T5, I’m sure Wikipedia would show where that is!). So I am now officially out of my almost-remission.

They think that a dose or two of radiotherapy would help to either shrink it down and stop the effects, or at least render the lesions non-dangerous

The T5 one is that is pressing on my spine and causing the problems to both my legs and my lack of weeing problem.. I can feel sensations of wanting to go but find it impossible TO go - hence the rather unflattering catheter and bag I now have fitted. Should have had these fitted for nights out ages ago, saves bothering to go to the WC!

Long and he short of it is that the cancer is active again but they seem confident some radiotherapy will stem it

Sat here in the chair by my bed listening to some Testament, chewing on a tube of BBQ Pringles and waiting for H, my mum and brother to come down around noon.

Further updates will, I am sure, follow as and when they happen

EDIT: I suppose it’s a good thing is that it’s on my spine and not my head, would have been a lot worse if my head had erupted again :O