riddlermarc

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

Me!

Well, a funny few days have passed:

H and I got to Newquay Thursday afternoon and checked into the hotel just fine - bit of a problem as our room was right at the top on the third floor (no lifts).. lovely view of the beaches, harbour and sea (pictures to follow).
I was a little unsteady on my feet but managed to get through the day with the aid of a walking stick (not cool!) and we had a chilled out evening.

Friday morning I was more than a little worse, my balance was totally shot so we hit the beach for a walk on the flat, hard sand which was cool. Then we had a little mooch around Newquay centre which was cool but I tripped and fell flat on my face - fell flat on my face which was never a good thing and I was SO embarrassed!
We made it to the harbour, sat down and made a few calls (Macmillan nurse/consultant oncologist etc.) and it was decided we should return home for an early trip to Basingstoke A&E on Saturday morning.
A frantic 45 minutes packing and we made it to Newquay station and we jumped on the next available train (cost another £105 but hey) and made it back to Basingstoke by midnight.

Saturday morning H and I packed a bag each (we know the drill now) and headed up to A&E.. seen pretty much straight away they conferred with Southampton and in light of the worry I wasn’t able to pee any longer (sensation is there but nothing happens) they decided they wanted me in Southampton. Quicker to go under my own steam (well, Steve gave us a lift) than to wait for a non-emergency ambulance we quickly diverted home and picked up more/different stuff for what we rightly assumed would be a couple of days stay.
I had a set of x-rays taken not long after I arrived and come 9pm last night they whisked me down for an MRI scan.. took SO long and was so hot I fell asleep, despite the clatter of machinery skimming round my head.
Came back up to the ward and fell asleep pretty much straight away, missed Match of the Day though

Sunday morning brings the prospect of waiting to see if the consultants have any news, good or bad, so I am just lying propped up in bed listening to some Dougie MacLean on my headphones and surfing the web from my laptop via a really slow mobile connection - I have had to turn off image downloads in Firefox to make most sites usable!

Although we spent a huge wadge of cash on what was just 26 hours in Newquay, we both think it was definitely worth it. I think we both new something was hovering just over the medical horizon and the Thursday was our 10th anniversary of being together so it had real special meaning that we made it to Newquay at least fot that day. SO glad we made it, things liek that make everything worthwhile.

Pictures to follow, we seemed to take a load in those few hours as if we needed to pack as much in as we could

Well, I headed up to A & E today at the advice of my GP - he wrote me a letter which gave me higher status at the hospital and I was seem straight away.

They conferred with my consultant down in Southampton and came to the conclusion my gammy legs are nothing to do with any potential cancer issues so they sent me away with the promise of a redirection to Neurotherapy in the near future . Basically good news, I am okay and it isn’t anything (at the mo) to worry about.

Newquay here we come!!!!

Last Thursday morning I woke up and both my legs below the knees were quite bad with pins and needles and my balance is duly shot to hell. I don’t know if this is just some sort of trapped nerve due to my dodgy back or (more likely)  something going on in the old bread box.

Seeing as my original brain tumour made me lose most of my balance, and they only managed to remove 90% or it, there’s the potential that that has started acting up again and eaten away a bit more of my balance/walking brain bits.

It’s all conjecture at the moment but H and I are extremely worried, I’m walking like  I am permanently pissed (if only!) and I think I am going to have to break out the walking stick again to help keep me upright.

I had a chat with my GP yesterday and he is trying to push through a scan and appointment with the guys down in So’ton in the near future so we can see if anything HAS started up or appeared since my last scan around 6 weeks ago.

I can’t bloody believe it, I am really pissed off ’cause H and I are heading for Newquay on Thursday for a long weekend break.. it could have waited till after that We’ll have a good time anyway, won’t be able to do quite as much as we’d planned but just take it a little easier. We are both worrying this could be our last trip together, even though we thought that about our last trip to Bournemouth.

Fingers crossed.

Well, after waiting an hour in the waiting room to see the Consultant we finally found out why - Basingstoke had forgotten to send through my scan results and Southampton were chasing them there and then to get a faxed copy. We went in to see the Consultant (my old doctor Dr Simmons) and he checked me over with no problems found. Then he said as soon as they received the fax copy he’d ring me to let me know the results.. as we were leaving the consulting room, a nurse rushed in the fax hot off the presses and we went back in the consulting room.

A quick read of the report later, Dr Simmons said that everything seemed okay - no oddities in my trunk, liver, lungs etc and my head showed no change from the previous scan four months ago.. all in all a glowing report again! I was convinced I wouldn’t be so lucky as to have two good reports in a row but hey, I was wrong.

So tonight we are off to my sister’s 18th birthday party, should be a great night - everyone has been told to dress up smart and NO jeans.. so shirt, trousers and jacket for me

Thanks to all the wellwishers who send us messages this morning, maybe your good thoughts DID help to swing things - thank you