2010 - 9th September - Just the right few words from the right people

I've had a pretty weird week really.  After a great weekend, though sad, the house was empty again.  Monday I had to wait in for Eon to come and try for the fourth time to replace my meter - their idea, not mine.  By 1pm exactly I rang them, to complain - apparently they'd been at 8.13. Oh no, no, no.  I sat with the conservatory door open for 45 minutes before then watching the damn meter with a view of the drive - they did NOT turn up, did NOT call, did NOT post a card to say they'd missed me.  They sent me a compensation claim form.

Then I went to look at a house - it was a bit cheaper than mine, so would financially be a straight swap after fees.  There were great things about it - but the downstairs shower room and bathroom were dated and looked shabbier than my own.  The garden was north facing and although low maintenance with a lovely pond and running water and summer house, just wasn't the same as having huge fields to look across, the living room was darker and smaller than mine.  It just wasn't me.

Finally I set off to meet Karys - hadn't seen her for a few weeks.  Her phone kept going to voicemail but eventually she answered and came out, looking lovely, not tired like she does on a Sunday when she's done her paper round and had an early start.  Then this tall boy came out and said "hello mum".  Two words I've wanted to hear from him for 2.5 years.  I stared at him for what felt like too long and struggled out of the car and hugged him.  I didn't recognise my own son.  His hair is shorter, his voice deeper, wearing contacts not glasses, he's shot up to 6'2 and he's not yet 16, wearing a prefect badge.  He's just grown.  I managed not to cry too much and arranged to meet him at the Wimpy - since I only have a 2 seater now.  He'd asked his sister to let him know next time I was meeting her.  She'd never said a word, but smiled and said "I thought it would be better if I didn't".

I was a nervous wreck, worried about staring at my son, ignoring my daughter, being too weird etc.  and I tire quickly still - especially on the fentanyl patches it seems.  He's doing really well at school, so both of them have done and I couldn't be more proud that what they've had to put up with hasn't affected them in the ways I feared it would.  Not wanting to bore them to tears, I dropped K at her boyfriend's and hugged my son goodbye - told him I'd missed him and he said he'd missed me too.  He looked a bit red eyed and I just wanted to take him home.  Trying so hard to be cool about everything, I just hope they didn't think I was being flippant.  Just wanted to make it easier on them both.

On the drive home, my colorectal nurse rang with MRI results.  No evidence of local recurrence.  The CT had shown "something" but seems it was just scarring or something - so just lungs and liver to deal with.  Sadly no cause of pain but I know what that is deep down, I don't need proof any more.  She also said they want to move my 30th Sept appointment with Dr Tom forward - got it in the post today - for Friday 17th.  They want to "get me started" on something soon.  But I'm not ready, I don't want it.  The questions buzzing round my head all the way home and all this week:

How can I take time off to see onco when boss is getting married/on honeymoon?
He already told me (after letting him know I refused a sick note for my back pain weeks ago) that "you can't take time off sick when you work for a small business.

Assuming I dare take time off work - how can I live on SSP?

How can I cope at work when I just want to sleep so much and am getting more and more tired as the weeks go by especially on the fentanyl?

Should I sell my house/see if I can change to an interest only mortgage?  I've been doing sums all week and can't get the figures to work.  I can't retire early, I'm too young.  Oh, yeah, too young for bowel cancer anyway aren't I?

So with all this added stress and not actually wanting chemo yet/ever again, I've struggled with tears at work this week.  On Tuesday I managed to mention I was finding it quite hard especially on the morphine - to which my boss reacted by breathing heavily through his nose, slamming things around on his desk and then ringing a customer to move an appointment forward "can I leave the office right now?" and left me alone again.  To spend the rest of the afternoon battling tears whilst trying to transfer their accounts to Sage for the first time.  That night I went to bed, and fell asleep straight away, at 18:11 - woke up finally at 7:10 (woke briefly at midnight and 5am.

  Wednesday he was mostly with people out of the office.  He wasn't there at all Thursday - which for me started with losing it with a stroppy driver and us both swearing.  I was trying to keep my breakfast down so was a couple of minutes late opening up.  He'd dumped a pallet of tiles outside the warehouse - I asked him to bring them in, which he didn't want to do since he'd "loaded everything again".  I said I'd refuse delivery if they weren't on the premises safely.  Much huffing and rolling of eyes - I thought I'd let him know however bad his day was, mine was assuredly worse.  He didn't believe that - so I put him straight.  His response was "OH for fuck's sake" but he moved the pallet without another word.  I cried for about an hour before a customer rang and I had to pull it together a bit.  Luckily no one came in all day, just a couple of calls and I got most of the accounts stuff finished, managed to stop the tears some time after lunch, after I'd established I don't qualify for a payment holiday on my mortgage because of my credit score???  Never had a problem before so no idea what that's about.

I ranted to Beckie on email, that helped more than I expected.  She offered some very practical help, which I hoped I'd never need to accept and got in touch with my usual source of positive thought support, who delivered as always.

Mum rang that evening and asked how I was - at which point it all came tumbling out, the tears, the fears, the questions, the unfairness of everything and having to try and sort the rest of my life out whilst not "living" because I need to drag myself to work for fear of losing my home.  She told me to get to the surgery and take time off, that she'll help me out till I sort my mortgage (I should at least be able to pay only the interest but may still need to swap to a better rate and eventually the goverment will cover the interest for you - by way of deferring it) and benefits.  At this point I was still waiting for MacMillan (understaffed and I know from my colorectal nurse, oversubscribed very much right now with a lot of cancer patients on the MDT list) to contact me after referral.  There comes a time when you have to give up pride and listen to what you know makes sense and allow people to do what they can, as you'd hope you could for them.

My GP was not so impressed at my boss telling me I "couldn't take time off sick" and signed me off for three months, knowing I'll be off for at least 6 when I start chemo, this seems like a sensible starting point.  He's referring me to their district nurse who may also be able to help with benefits.

I got home, feeling like a huge weight had been lifted and finally thought about eating something - but took another two hours to get round to it.  The Mac nurse rang!  She went through what she is 99.99% sure I am entitled to just from my diagnosis and it's a lot more than I thought.  Just that short part of the call made everything OK again.  She's passed my claim onto the Welfare benefit lady who'll contact me next week, then will send all claims off together when we know what is applicable.  See Mac nurse the week after.

So the depths of what was becoming depression to feeling in control again in a few short days.  People who know how to work the system claim for everything, those of us who think "well I'm not THAT bad, I'll not be entitled" don't get what we're entitled to.  Sad fact.  So, regardless of what websites indicate you MAY not be entitled to, wait till you can speak to someone who really does know.  You'll be surprised.  I'm not getting my house valued on Monday now - Mac nurse thinks it's not necessary and asked me not to make any rash decisions until they'd had chance to go through everything.  I could kiss her.  I could kiss a lot of people.  But not my boss - sis took my sick note in.  Amongst other things that upset her he said "I'm getting married in a week.........obviously she's invited".  Her response was "I think that's the least of her worries don't you?".

People are strange, but for the most part, those around me are good, very good, the best.