Tuesday, 7 June 2011

2011 - 7th June - Still Waiting

It looks like I won't be going to Leeds now, more likely Nottingham.  I went to see my surgeon last night at his private clinic (he wanted to see me so it was still free, I miss my old job with private perks).  He wants to look into options before sending me anywhere and has promised to talk to Mr Armitage at Nottingham and perhaps his professor at St Marks (Colorectal top dogs).  He says the surgery will be tricky and he's never seen a case where someone developed a fistula years after radiation, plus the fact that there isn't any cancer in the area (had biopsy back in December, nothing).  He apologised for the extra waiting but since my bloods will only have got back to normal around now I'm not fussed.  I am glad it'll be keyhole though, wonder if I can bully the surgeon into poking about my left hip and free up some scar tissue so I can get off these drugs?

Despite having the Fentanyl increased by 25% I still get incredibly pain lying down and sometimes just sitting, usually in the car.  I'm hitting the crack lollies on a regular basis now - sometimes I've woken up in the night, mostly I can't sleep till gone 5am.  Yesterday I woke up to no pain so stayed in bed just for the novelty!  It's manageable with the lollies but I prefer it when it's not there at all, obviously.

I had a scan on Sunday - yes Sunday, the scanner broke down on Thursday so they played catch up at the weekend.  I'd been there 40 minutes before anyone came to the waiting room (no reception at weekends) and she asked how long I'd been drinking for (I hadn't been seen to be given anything to drink) so I had to neck 2 litres of water in 20 minutes.  I thought I'd better have a crack lolly when she was putting the cannula in so it had time to kick in before I lay on the scanner bed.  She'd never seen them before and asked to look at one - then asked "And what are you going to do with that?" "Put it in my mouth!" I said, putting it in my mouth - I told her it was sub mucosal so thought she might figure it out.  Shivering on the bed with a blanket the radiographer asked if my patches were for cigarettes "No they're MINE".  I told her they were pain relief - they could as easily have been HRT too.  Why assume I'm a smoker with no hair, no eyelashes, sparse eyebrows, a PICC line dressing on one arm?  It was about my 12th scan I reckon, yet I still forget how bloody cold that room is.

I've been making a lot more jewellery including beaded rings lately.  And reading.  I get up thinking "oo beads" then when anything watchable comes on TV it's "oo TV time" and at bed time "oo now it's reading time". So basically I'm enjoying NOT being on chemo or being in hospital.  Still having fistula trauma every other week so far so that's a bind but it's soon forgotten.

I've not seen so much of my daughter lately, she's bogged down finishing off her final project before college ends and she enters the ranks of the unemployed.  My son has been round weekly being himself, the self he was before, but bigger and more independent.  No sign of any moody teenagers.  We always have some sort of evil take away food when he's here - fish & chips during chemo and the odd chinese or easy reheat in the oven stuff.  Who wants to waste time cooking proper meals when they can be with their kids?  He has his license now and booked CBT for 11th June. His sister has the application form to fill in then once I've pinned Dr Tom down to say I'm not expected to live more than 12 months I can cash in some of my pension and pay for her driving lessons and get her a car, my son a bike.  I'm not sure who's most excited about the prospect.  Yes I'm worried, of course, but I'm excited that they'll be mobile and more independent (and able to visit me without me doing tiring 26 mile round trips to fetch them/take them home). They stand more chance of getting jobs if they can travel without relying on walking, cycling or buses (you can't rely on the buses here, they stop at around 6pm and only Mon - Sat.).

I managed to find someone with half a brain on a dating site a couple of weeks ago and after emailing for a while, then texting he asked if I fancied meeting up at Belton Woods and getting something to eat.  I agreed...then he mentioned how awful cancer was a couple of times because of Seve dying and I felt I ought to mention it.  He said he was shocked but conversation didn't end abruptly and he mentioned meeting again....and that was the last I heard from him.  I expected it but was planning to actually meet him first, just because I never get out anywhere, so why not?  Bit of a bombshell really, but I can't honestly remember how it feels to not know how I'm going to die, or what it's like to worry about paying my mortgage off early in the hope I can retire if I want to.  I can't remember how it feels to think that people my age getting cancer is shocking.  What's it like to worry about normal things, to moan about petty things?  All those things are alien to me now.  I realised this last time I was in for chemo, the clerking Dr asked the usual questions, examined me and told me hoped the cancer works and gets rid of it all........so obviously I had to tell him that won't happen since it's just palliative.  His face was a mixture of disguised shock and sympathy.  He apologised - either for my situation or that fact that he'd assumed I must be in a good mood because I still thought I had a chance of "winning".  The way I see it I already have won because I'm getting on with things and enjoying the small stuff.  Cancer's just a really, really slow bus coming towards me in slow motion, nobody knows when it's going to actually hit me.


Tony Songhurst said...


Your writing is so poetic, especially the last lines about the slow bus...perfect analogy.

Also the details about the Dr and they way they treat you, look at you...they do sometimes make the assumption that because your care is palliative you should be in pieces....I met my palliative care team at the chesterfield hosp for the first time last week to discuss my situation and pain relief due to the 'unexplained' pain in the arse...the registrar sat me down and almost tilted her head to one side with sympathy and after asking me if I had anyone that could sit with me (I only had my 16yr old daughter sitting in the waiting room) then asked me if i understood who they were and what they did! Oh well at least they care!

I look forward to TV time etc as that still keeps me going and at times when I can stand I enjoy cooking dinner with my daughter although the other day when Fran was working we wanted to try out the new pizza on-line ordering..so great pizza and great company. I am so lucky that I have one of my babies with me...she makes great cups of tea!

I do hope they sort you out soon i.e. the plug.

All the very best


Carole said...

Hi Lisa,

Great to see a proper update from you...

Another item for your book of 'stupid things that people say' I think (for the cigarette patches)...goes alongside the 'put your knees down one' - that still makes me lol :-)

Great to hear that you've been spending some time with your lad - a good quality Chinese take-away can't really be beaten at times, and as you rightly say, saves time in the kitchen too..it's all good

You're an amazing woman Lisa - don't you ever forget it either!

Huge hugs and much luv as ever

yrsa said...

Hi Lisa!

I've written this comment several times and then erased it. You don't know me and I do'nt know you - and you might not want comments from sobbing swedes with lousy grammar and spelling. But then I tought to myself; maybe I can, at least, make her smile?

I found your blog surfing the internet for a bucket list (long story) and just want to let you know that you and your struggle with ordinary life and your disease moved me.
I used to work as a nurse, often with persons with terminal diseases. It's at lie to say that I can totally understand the pain and anxiety a person goes through during the fight of e.g cancer. I'm, as far as I know, healthy, how rude isn't that!?
I can, however, understand the struggle of being a single mum and the constant worrying of your children and your preperation of their lives when your gone (you Tigermum, you! Somehow this sound better in swedish... It's a compliment, I assure you!).

Have you ever thought of writing a book? You tell your story so well and it could be a help for those who meet people like you in their proffesion every day. It's one thing to treat a disease and an other thing to meet the person behind the disease (or infront of the disease - the cancer is not YOU, it's an uninvited housetrashing squatter and should not have the benefit of being the first thing about you).

Today I'm studying public health at the university, although I'll soon be fourty and most of my classmates are in their twenties. I hope to be a part of the research work that includes red wine, an occasionally pint of ale, a good laugh and feeling good about your self as well as being psysically active and eating your vegetables. So, my wish for you is an occasionally pint at the pub, good laughs and many hugs and feeling good about your self. You're doing the best you can with what you have been given, and noone can ask for more of you. You are amazing just the way you are!

Hope you don't mind an occasionally sobbing swede/Petra

Anonymous said...

I don't know you and we will never meet so please accept a little unutterable love from a stranger.

Tony Songhurst said...

Hey Lisa, whats the latest?

T x