Tuesday, 20 September 2011

2011 - 20th August - Couldn't Organise A Piss Up In A Brewery...

I had my haircut on Tuesday - managing to arrive half an hour late, because despite putting the right time in my diary I invented my own time :o( Luckily Gary was really good about it and just dampened it and dry cut it.  The fluff is finally gone and it just looks like a very short deliberate cut.  It's much better, albeit shorter, but now I can let it grow in earnest for as long as is possible.

Lisa popped over for a couple of hours on Thursday, her youngest now at school.  I'd not seen her since January.  Unfortunately since she kept her shoes on she ended up running out to move my blue bin 2 yards because they arrived late morning when I thought they'd been - telling her "if you put it out we know you want it emptying" "Yes she would have done but she thought you'd already been." Duh.  Lisa used to be a hairdresser.  Double Duh!  I know she'd have done my hair if I'd asked, but that's not something I can do, anyway I like the idea of going TO a hairdressers even if I did only have 4mm cut off and it took 20 minutes.

Ian came up from Bristol this weekend to visit which was hard only in the respect that I don't yet have my new sofas and chair so had to share a sofa the entire weekend!  Not used to such hardships and the pain is present sitting down these days.  He seemed happy enough to sit around watching TV/reading rather than anything more stimulating but I don't know if he was bored to tears or not...hopefully not. Last time we saw each other was in Kent over a year ago.  He had an invite plus one to a wedding where he only really knew the bride.  After a Facebook appeal and a couple of cancellations I drove down to meet a load of strangers in Kent!  Mental.  They all thought we were a couple despite not actually seeing each other in the last 10 years.

Phoenix came on Saturday night so I got to see him sat at the dining table writing an essay for homework for the first time in years on Sunday afternoon.  Seriously I get and excited giddy warm feeling at things like this.  To those of you who aren't living on borrowed time and were not estranged from your beloved son for 2.5 years due to being ill in the first place I guess it's hard to understand.  He discussed it with me too which made it hard to contain myself and appear cool and casual about it, not wanting to scare him off from ever talking to me about psychology again. Plus he'd been over a couple of hours on Wednesday after college, finishing early. Great timing because he moved the old sofa in from the conservatory to the living room ready for new leather corner suite owners to collect.  New sofas should be here early October.

This week I finally rang the hospital about my surgery - couldn't do it last week.  As expected nobody had confirmed a thing.  I asked Mr A's surgery if she could confirm both surgeons AND a theatre are free on A day in mid October and if so when could I expect to hear in writing about admission dates, times, bowel prep or fasting etc.  She said Mr Aa was free on two days, and she thought Mr A was, but there was no theatre list for that day - I told her no, he was having to add an extra day for me as he planned to do in September.  I then explained that this is actually having a negative effect on my life expectancy.  I cannot and will not have chemotherapy until I am recovered from this surgery.  I cannot have the surgery if I'm on chemo.  By delaying surgery my tumours continue to double every three months and I may not be able to have any further treatment if I leave it too much longer, meaning I'll die sooner.  I didn't see any point in beating about the bush.  I wasn't rude in the slightest or bleating, I just told her how it was to explain why I needed her to check everything and ring me back. She rang back today having spoken to both Messrs A and they are both available and theatre is booked.  She also confirmed that yes, waiting list will write to me to tell me what, when, where etc.  If I don't have a letter in a week I shall be ringing again.

I'm really liking the living room with my new mirror and having got rid of that massive brown leather corner affair.  It feels so much more cosy and bigger.  It won't feel quite as large with two sofas and a chair but cosy I'm sure is here to stay.  


Monday, 12 September 2011

2011 August Update

I've managed to get out and about a bit this last month or so.  I managed the drive to Manchester to stay with Faerie and Lady D (fellow patients, or ex patients I should say).  After a few hours chat catching up on things, tea, mushroom risotto and hot soya chocolate before bedtime on Friday night I spent a cosy night in Faerie's bed while she took the spare room.  It's all roses and feather pillows and duvet like my bed but having spent a couple of agonising days with the fistula and stoma being complete bastards (second time in two weeks making me utterly depressed) that same week I took an inco sheet to put on her bed for fear of either leaking again.

Lady D arrived Saturday morning so it was tea, toast then into town.  We had time for a quick whizz around Primark before crossing the road to Debenhams for massages and facials.  We also had after treatment nibbles and bubbles laid on at Faerie's request to get things going.  We got caught by a make up rep offering to do our make up - after we'd had facials and were bare faced, why not?  Having foundation on highlighted a minor excess in facial hair to one of us so she was persuaded to try threading since it was only a fiver we all had it done.  What she didn't mention was that she'd never actually removed the hair above her lip before.  Ever.  So while I was drugged up with Fentanyl, another dosed up on paracetamol (pre wax pain relief from earlier) we were a bit surprised when she cried in pain....obviously we were sympathetic and obviously were not doubled up with our own tears of laughter.  Because friends don't do that.

Singing along to various cheesy tunes we headed back to eat more food and drink a toast to Bec and Peter who are no longer with us.  I couldn't tell you what we talk about, but we never seem to run out of things to say and I still wonder at how well we all get on having only met through having the same type of cancer diagnosis at the same time.

It was a good day to drive back in on Sunday with the top down.

I've finally paid horrendous amounts of money having the lid of my cesspit replaced and brought up to regulations - ie I can now safely drive a car over the concrete.  The amount of money I've spent makes me feel a little ill but nobody would ever buy this house from me, or me executors when I'm gone without it being done so I'm saving everybody a literally crappy job.

I spent a day with Maurice, Sue, Charlotte and her boyfriend Matt who offered to take me sofa shopping.  I'd done a bit of window shopping on my own and with Karys but wanted to hit the big stores.  I was stuck on getting a big round cuddle chair - the one I really liked swivelled.  Despite it sounding like the most boring day ever, nobody seemed bored at all, especially when Sue reclined a chair and her shoe flew across the room.  I ended up ordering two cuddle sofas which will seat two people or one ME and a standard chair because I liked the fabric, different patterned cushions and the colours, plus everyone said they were comfortable.

The kids have been over weekly which always makes me feel better and it's usually at the weekend so it gives me something to expect and look forward to.  They've both done really well in their exam results and Phoenix has started at the college in the town near me and it's nice to know he's nearby somehow.  They were both here this weekend to stay so the house felt full again and as much as I joke about their stuff taking up all the room and them eating all the food I can't think of a better way to spend a weekend than with the two people who mean the most to me.

I was supposed to have surgery this week - tomorrow in fact.  However despite this being booked in three weeks ago, I hadn't had it confirmed so called on Tuesday and was told on Wednesday it wasn't happening as one surgeon couldn't make it from Nottingham.  Yes it's so complex and unusual it's taking two surgeons. My own surgeon called his new registrar in and told him to make sure he was in the theatre for my ops as "you'll never see this again".  See I'm special again.  So it MAY be happening in October but I'm not counting on it.  They seem unable to pick up the phone and talk to each to ask if they are both free on the same day and book a theatre.  Mean while they're playing with my life because I can't have surgery if I'm on chemo.  At some point I need to restart chemo or accelerate my impending death.

Friday I finally got to see the results of the scan I had on 1st August, 5 weeks ago.  As expected, growth in lung tumours and the larger liver tumour looks to be double in size.  As I look so much better - noted by the nurse who saw me pass out last time and my onco who repeatedly saw me looking shit after poison on the ward he suggested I might want to wait a while still and enjoy feeling well since the effects of chemo stop me having any kind of life at all.  I'll see him in a couple of months after which I'll hopefully have had surgery and we can see if I'm having any symptoms yet from the tumours and if I want to go back on treatment.  He suggested maybe I could try the first drug I had, Oxaliplatin (Poxy Oxy) but I insisted if I ever have it again it will have to be a very low dose.  It ruined the nerves in my limbs from elbows and knees down.  Made me unable to walk, need physiotherapy to walk properly again and meant I couldn't touch or drink anything that wasn't warmer than room temperature or it hurt.  Cold weather made my throat close up and my mouth muscles contract, lips go numb and even room temperature drinks felt like swallowing crushed glass.  Still my hair just got thin, it didn't fall out...........and I guess looking back I tolerated that drug better?  I don't know.  He's also sending a sample of my tumour off for K-ras testing.  If the gene shows no mutation I may be able to have Cetuxiab which is another drug to help kill off the cancer and makes any chemo work better.  Side effects - acne like rash, nausea, diarrhoea, flaky sore hands feet and other areas of skin.  Terrific.  Can't wait.  I told him I'll just try and do chemo in the winter, where I spend most my time in hospital using their heating not mine and summers at home.

I've tidied the conservatory, killed 7 giant spiders with a little help from the kids (I did 4), put up a new toilet roll holder, sealed around Karys' bedroom window to stop the wind howling in, sealed up the gap in the conservatory roof to hopefully prevent further leaks and may eventually get round to decorating in there one day!

Tomorrow I'm having my first new hair haircut.  more of a case of shaving a couple of mms off the ends but at least it should look like a style.