Wednesday, 25 August 2010

2010 25th August - Well, we weren't expecting THAT were we?

I should update you with what's been happening since February.

At the end of March I went in for my urethral dilatation (sounds painful, it was) under general anaesthetic.  As expected I woke up shaking and shivering and had the bear hugger blanket (they fill them with hot air from what looks like a giant hairdryer) and was in recovery longer than everyone else.  This is normal for me - I just get a bit wibbly after I've been knocked out, but worrying for those ringing for news that I didn't die on the table.  As I live alone and had to make a decision on admission check day I opted for an overnight stay - I couldn't guarantee anyone could take time off work if I wasn't well afterwards - risk of bleeding, kidney infection etc.  The girl in the bed opposite was on methodone, crutches and several months pregnant.  She also timed her cigarette breaks around Jeremy Kyle.  I only know this because she was telling her mum on the phone that's what she was doing.  She threw up in the morning just as I was eating my toast, which was nice.

I'd been given antibiotics as I'm prone to UTIs but after a week I started to get a backache.  It didn't feel like kidney pain and since I'd had the antibiotics thought I must have done something and expected it would go away.  In the middle of April I found the MX5 I was looking for - sold the Kia back to the garage I bought it from and now am the proud owner of a red, soft top & hard top Mk II.

The backache continued and after a couple of months, just before I was due to go to France to see my oldest friend from school (I met her before the others, as I was reminded recently - sorry H but I have slept and taken some pretty heavy drugs since then), I went to the surgery.  The locum suggested paracetamol, then ibuprofen two hours later and alternate to maximum dose.  Relieved she thought nothing of it, I packed for France and spent a few days in just as much pain as I'd been in before.  The drugs weren't really touching it.  By this point I had managed to convince myself there were radiation fractures or something - because I kept getting tiny bruises around where my sacrum is.  It didn't ruin my break, but it was "there".  We had a night at St Nazaire in an apartment which was a lovely break, for me and I hope for my friend (who'd been prised away from her three children).  I think I've just about forgiven her for leaving the country, since this time I got the whole gite to myself!  I'm tempted to move out there...no, really I am!

I returned to England, and the surgery to be prescribed tramadol/paracetamol from another locum.  And a suggestion to contact the hospital for a scan as "it's probably a recurrence of your cancer".  Nice.  Now that thought had flitted across my mind but I'd brushed it off as quickly.

After ringing the colorectal nurse and contacting the oncology secretary to see if I should have been sent another 6 month follow up appointment (they'd neglected to arrange that so I figured they didn't like me any more) I got two appointments.  My surgeon requested a CT scan and the usual blue "2 week wait - suspected cancer" stickers were placed on the request.  By now the pain was still there despite the initial relief from the painkillers.  Sitting was painful and got worse during my working day and every night when I laid down I had an hour or two, literally of agonising writhing around sobbing, big tears and puffy eyes.  The pain was incredible.  A third trip to the surgery and I got tramadol separately from paracetamol instead of combined.  Now I was on 16 painkillers a day, plus the HRT.  Free scripts for cancer patients though - small mercy much welcomed.

My little sis got married, I wore a posh frock (hers was infinitely better obviously) and managed to get through the day by knocking back the tramadol every three hours instead of 6.  Oops.  I had to leave at 8pm and go to bed, I was knackered.  I'd been losing weight - not sure when from but possibly when the pain started in the beginning of April.  Lack of sleep and the drugs could be the cause, but deep down I felt wrong.  Like before.  My CEA marker was up, still within normal, but up for me.  Keeping all of this from Becky felt like the hardest thing, I was managing not to lie to her but avoid the subject.  I couldn't bring all those memories back from the first time I got ill, not when she had a wedding and a honeymoon in Florida to look forward to.

While she was away I got the call from the hospital on 28th July 11am.  No real explanation for the pain I'm in, but what surprised them was, I have liver and lung tumours instead.  My first reaction was "but if you can't see what's causing the pain, I can't live with this forever".  The reaction of "Oh shit, that's stage 4 now then" hit a few seconds later.

I saw my oncologist on 2nd August, he confirmed I'm incurable.  I have lots of tiny lung tumours and two on my liver, possibly a recurrence at the anastamosis (where they joined up my colon to the rectal stump) and a renal lymph node.  The bad news was the lungs.  If it was just my liver I'd be looking at surgery/RFA and maybe a better outcome.

Today I had an MRI to see if they can rule out a local recurrence or perhaps see the cause of my pain in my pelvis.  What started as lower backache now spreads to my hips, around the back and to the front.  It's a sickening pain.  When the hospital finally get some radioisotopes to do a bone scan, I'll have one of those and then see my oncologist again.  I have a feeling he's going to say the C word.  (chemo).

4 comments:

Carole said...

Awwww, Loopy :-(

I found your blog recently and have been reading through for the past week or so - then today found your update. I'm gutted for you, seriously.
From all the blogs I found, yours was looking like the 'no further Cancer problems' one....I know you've had the other stuff, RT damage etc but I thought you'd escaped the mets side.
Am feeling so disappointed for you.

I'm at the beginning of my damn rectal cancer journey, APR surgery soon despite all my best efforts to avoid it...

Please do keep your blog updated, I want to keep in touch with how you're doing.

Huge hugs for your disappointing news - Carole xxx

Loopy said...

Thanks Carole

I will be keeping up with the blog again. I'd got to the point where I felt it was time I stopped dwelling on cancer and tried to put it behind me (despite treatment side effects still having a large part to play in my day to day life). Once I became worried about a recurrence I didn't want to write until my results were in and my family were aware.

Gite said...

"one of my two oldest friends from school,"??????
I think you'll find that I outrank Lisa as your oldest friend by atleast 7 days as WE met at the open evening before school started but I'll accept a written public apology on here.

Loopy said...

Sheesh, it was a LONG time ago H! I've like slept since then and everything, in fact it's chemobrain, yes that's what's wrong. Anyway. I'm sorry xx