Twitter Says This Is True

I've no idea. But if it is, it's blown my mind....

"If our sun were the size of a white blood cell, the Milky Way galaxy would be the size of the continental U.S."

How small are we? Will do an update blog later on this morning.... J x

Twitter

"Just how hairy was the person who invented a shampoo called Head & Shoulders?" Tee hee. J x

The Lights! The Lights!

My switches are switched and working. The lights are out but somebody's home.... J x

And We're.....

.....back on the trial. I know, I know.  But let's temper our annoyance with process and procedures and left hand/right hand, NHS bureaucracy etc etc with the sheer unadulterated joy of (as at this precise instant in time) being back on the damn thing and therefore having some hope of.... what? Not really sure but I feel hopeful. And that's a good feeling and I'd like to stay with that for a little bit.

In other good news the chest infection has cleared up and so we're also back on my rapid steroid detox programme although it's even more rapid than it was before. So I need to be a bit careful and keep an eye on my body's reaction to the withdrawal. Likelihood is I'm going to feel tired and lethargic (I'll add in irritable, they didn't say irritable but I know what I'm like when I'm tired and lethargic) but hopefully no worse than that. But, discretion being the better part of valour, I've decided not to go to Swansea for the weekend as I'd originally planned just in case it does go beyond tired and lethargic. Better to be up here and close to The Christie in case we do need any interventions of any sort.  Dad understands and is just really happy that I'm back on the trial (insert usual disclaimers about not knowing yet whether I'll get new drug). On current plans and assuming the detox works we could be looking at randomisation on Monday. But then we also need to re-do all the tests that are now out of date for the trial - CT scan (will be a last minute call on a cancellation), blood tests (hundreds) and lung function stuff. Oh you can just imagine the arrangements to be made and forms to be filled in.  

I've also lost more weight and so carer in chief has now started nagging about drinking more Ensure Plus. That's fine. I can do that. 

And I'm going to stop there for now. May report later (although there's football to watch and possibly cry over). J x

Oooooh look at the time.....

...... Cagney & Lacey. :-) J x

Lovely Day

Sunshine. Always does one good to see some sun. Shining a light into those dark corners and illuminating things (such as an heterosexual past apparently) that one had tried to put behind one - but your dark secrets always find you out..... :-) Only joking Jane, good to have you aboard the Lewis Cancer Support Wagon, feel free to make as many or as few contributions as you like!

I'm pleased to report that the antibiotics seem to be doing the trick (yes, I'll make sure I finish the course) and my chest infection feels a little less chesty and a little less infection-y..... Still taking it easy though as instructed by the Carer in Chief.

Watched all 3 episodes last night of 37 Days. What a superb programme. Absolutely fascinating. No idea why I've become a bit of a WW1 fanatic of late but the BBC seems to have done a great job in bringing together a disparate suite of programmes in various formats looking at the whole thing from diverse viewpoints. Well done Auntie Beeb, I say.

Dad seems to be doing OK back in Wales and, all things being equal - such as a clean bill of health and permission granted to travel, I shall pop down to see him next weekend.

That's all. J x

The Upside

.... to an enforced confinement is that the BBC are re-running Cagney & Lacey in the afternoons..... Just saying. And the road sign "Entering Queens" still makes me smile. J x

Clinic Feedback

So turns out the reason I'm feeling so rotten is that I have a chest infection and thrush in my mouth and throat.  So I'm on a 7 day course of antibiotics, 7 day course of anti-thrush medication, plus mouthwashes and other stuff.  And in the meantime I'm to stay on my current dose of steroids and stop the weaning process.  Looking forward this probably means my place on the drug trial will be in jeopardy but there's not a lot I can do about that. We need to clear up the infection. So in addition to taking the medication for 7 days I will also be taking it easy for the next 7 days and not getting out and about as much as I have of late.  May well allow me to catch up on some paperwork at home and some other clearing out I've been meaning to do for ages.

Saw Orlando last night at The Royal Exchange. Fabulous play. I urge you to go and see it if you get the chance.  I may well try and read the book now too. Suranne Jones is a really good actress but she was well supported by her fellow actors. And the writing was really good. I loved it.

That's all. J x

Oh

And we've passed the 90,000 hits point. Yay. J x

Advisory

For anyone passing the flat please note that my lights will be switched on night and day for the next week or so (long story, won't bore you). Please don't worry that I've collapsed in a heap of my own vomit and excrement and you need to call the police (or at least a fumigator or anything). It's just a "light switch thing". Normal service will hopefully be restored soon under the capable hands of Scott the electrician....  :-) J x

Don't we look lovely?

Yes we do. We look fabulous. 

Wedding was lovely.  Venue was lovely. Becky and Scott were gorgeous. Met some nice people. Had a dance. What more do you want?  That's all. J x

On Off On Off

Honestly, I've no idea really where we are with this now.  Having posted a really positive couple of posts I then proceeded to have a day and night from hell. But it was only one day and night and the memory is fading now so I won't bore you with all the details.  Suffice to say there was some pain, some constipation, quite a lot of sleeplessness and generally a feeling of being rather wretched.  But I'm sort of over that now and feeling a bit better. Yay.

More worryingly is the drug trial position which isn't as clear cut as I thought.  My main worry had been the radiotherapy and how that might interfere with the drug. Turns out it might have affected it but the radiotherapy itself was short lived and as long as there is a couple of weeks' gap it's not a problem.  The problem is the steroids....

I was put on a really high dose of steroids when I was first admitted to hospital following the MRI scan on the Monday (2? 3? weeks ago?). They were used to try and shrink the tumours away from compressing my spine and paralysing my legs. The radiotherapy takes time to build up and have a shrinking effect and, in fact, actually makes things worse to start with because it inflames the area.  Hence the high steroid dose.

The trouble with the steroids is that they affect the immune system too (there's a whole load of complicated science stuff around this and how your body needs to produce its own steroids too). And the trial drug is designed to act on my immune system. So you can see the problem for the Americans in this.

The other problem with steroids is that you can't just stop taking them. Apparently. You need to be slowly weaned off them.  Which then starts interfering with the trial parameters because they want to get up and running and don't want to wait around while I'm being slowly weaned.  So we've decided to up the weaning pace i.e. wean me more quickly than would otherwise be the case.  But this carries it's own dangers.  Will the inflammation from the radiotherapy reassert itself which could mean that we end up back with compression of the spine and paralysed legs? So I need to be really careful and keep a close eye on all my symptoms.  But fingers crossed we're steering a middle course that allows me to stay on the trial. Watch this space.

In the meantime it's off to the wedding of Michele's daughter tomorrow. I'm so looking forward to it. Becky is a beautiful woman and is going to look so fantastic and Scott is really handsome too and going to look just as good.  And of course me and DD are going to look just fabulous :-) I'll try and post some photos here for you all to see just how fabulous everyone looks on the day. 

And finally, I've won an award. The Vicky Clement-Jones award for volunteering. Awarded to me by Macmillan for all the work I've done for them.  I cannot even begin to tell you how chuffed I am about this.  It's just a certificate and I'm sure it's handed out to hundreds of volunteers all the time but it means someone noticed what I do and appreciates it. And I'm over the moon about it. And I believe that the may be an expenses paid trip to London to collect the certificate too. I'll take that. :)

Just back from seeing Dallas Buyers Club.  What a fantastic film. Really enjoyed it. And a real tour de force in acting from Matthew.  

That's all. J x

All Good

Feeling good today. And that's a nice feeling. 

Had a haircut this morning - told my hairdresser he could be radical because by this time next week I could be on a chemotherapy regime which would mean it would all fall out anyway..... But bless him, he didn't do too much damage and I will look vaguely respectable for the wedding on Saturday (you can breathe easily now Michele). 

Intended to buy a tie in town to wear on Saturday but really should have taken my shirt with me so I could choose the right colour. I didn't so I'll have to go back but I did buy a belt instead which cheered me up even more.  Yes, Hermes.

What else has happened?  

Ah yes, Sunday saw an intrepid band of 6 trooping out to Salford Quays to attend the recording of a new quiz show fronted by Andi Peters (yes, that one from all those years ago). He doesn't look bad for his age bless him but it's a dog of a show.  It's called Ejector Seat and seems to have no more premise than that someone thought of a set and then bolted a quiz onto the top of it.  Yes the contestants do, sort of, get "ejected" from their seats if they get enough questions wrong but it's just stupid and boring.  It airs in April sometime so keep an eye out and you may see us in the audience.  Me and Denise are the ones at the back complaining to each other about it and Lesley's the one answering her phone....

Went to Damson for a meal first. Not been there before. I really enjoyed the food (as did Gill, Lesley and Denise) but I didn't like the place and I thought the service was bad given that it's supposed to be a top notch restaurant. Won't be going again I imagine.  It was a long day out all told and by the time Denise  and I had run (yes, run, and me with lung cancer and everything) for the tram I was well ready for my bed.  Coiuuldnt sleep of course because of buzzing on steroids but I was physically exhausted.

Radiotherapy yesterday. The last one. Woo hoo. Went without a hitch. In fact went so smoothly that I was done and dusted and out of the place even before we'd reached my official, appointment time. That's not happened before. Left them muffins and brownies. 

Denise was round last night for me to try out a new recipe - mushroom stroganoff - from The Times that day. It was quite tasty if I say so myself and Denise finished off a huge plate of it so she clearly enjoyed it too.  I think you have to be very careful with dried mushrooms though. They're a very powerful taste and can overwhelm a bit which they did on my plate. I'd obviously just given myself a big spoonful of them.

We watched the Jeremy Paxman series on the First World War whilst eating. It's been a really good series and incredibly thought provoking for me.  So much stuff I didn't know and so many assumptions I'd made.  There are a couple of programmes on the BBC this week about whether or not we should have entered the war in the first place and I'll be watching those to get more info too.  Be interesting to see what they say life might have been like now if we hadn't gone in....

Seeing Sarah from Leeds later for an early tea at Felicinis and looking forward to seeing her because it's been far too long.  And then it's clinic at The Christie tomorrow. Still won't know what drug I'll be getting next week though - will find that out on Monday. Watch this space. As soon as I know, you'll know. 

And that's all. As I say, feeling good at the moment and just riding that wave.... J x

Damien Hirst

Didn't he open a bar a few years back called Pharmacy?  I'm thinking he might have been onto something. I think someone should invent the paracetamol martini and take the world by storm.  Just saying.

Anyway, I'm about to have two paracetamol followed by a martini so I'm there already really.  

Otherwise it's a quiet night in, in front of the telly for me.  Spent the morning shopping for a wedding suit (achieved, New & Lingwood at House of Fraser), then lunch at DD's with her, Dave and Gaynor before they all trooped off to the football (boring game but a win apparently) and I trooped back for a snooze on the sofa (achieved, and very nice too). Now awake and wondering what, the situation unfolding in Ukraine apart, to watch on TV whilst combining my booze and drugs.  The Season III Game of Thrones DVD box set arrived yesterday so that might be a good place to start. But then I've also got a load of stuff on my Sky Box that needs watching and clearing.  Anyway, none of it will get done just sitting here blogging so, thank you for checking in, I'm feeling not too bad at the moment so I wish you all a good night. That's all. J x

Fatigué

That's your actual French for "fatigued". Which is how I've been feeling all day. At least my body has but my mind is still a little buzzing. It just makes life and communication a little difficult when my own body is pulling me in opposite directions. I apologise therefore for any failures in communication that happen over the next week or so whilst I get over this radiotherapy (last session on Monday). 

Having said that, I'm waking up a little bit now having dozed on and off for most of the afternoon.  Might try cooking some food (pasta and sauce out of a jar!) in a bit. I'll certainly need to get myself a martini to start me on that process I think. 

Pretty much cancelled everything else I'd prearranged for this weekend (a place in the audience for a television pilot presented by Andi Peters on Sunday afternoon apart - I'm guessing no one would notice anyone walking out of that!). 

So that's where we are. More news and stuff as it happens (just don't expect much to happen in the week ahead). J x

Good News

I'll just put the good news up front - I'm still on the drug trial. Despite everything that has gone on (see below) I have not been disqualified and my "place" remains safe.  This is a huge relief to me - and I'm sure to others too - but of course we mustn't lose sight of the fact that I still haven't been randomised yet so we still don't know whether I'm on chemo or the trial drug.  But it's one more hurdle overcome and so it's good news. Phew.

I'll be randomised, as far as I know at the moment, on 03/03/14 and start whichever treatment I've been allocated on 05/03/14. 

But let's step back in time a bit.....

First of all sorry for the "radio silence" there has been here the past few days. Unfortunately there are times when I really need to look after myself and narrow my focus down to me and the next steps I need to take to progress and sometimes that doesn't allow room for me to be open and share with you all exactly what is going on.  Sorry but it's the only way I can cope sometimes. 

So anyway, hospital. You all know how I feel about hospitals.  About nurses. About the whole lack of an actual focus on the patient. But my views did change a little in The Christie. I saw nurses working together as a team to deliver an integrated system of care and, particularly, pain relief to patients and I was glad of it.  So I will admit that not all nurses are bad.  To be fair I've never actually said that - the lovely Debbie for instance we all know is like a beacon of hope for me.

But my time in hospital was not all pleasant.  I hate the lack of being in control. I hate the little annoying things that happen day in day out.  I hate that people say they will do things and then don't. 

And whilst it was great to see Dad, the timing for his visit could have been better. I was just out of hospital and it was his first visit to Manchester without Mum.  We both needed support with what we had to deal with but neither of us was able to give as much as we wanted to the other (at least that's how I felt). We're also both going through the readjustment to our lives and our relationship without Mum there. Because Mum was a huge part of our life.  She really was the core and centre of our family and I for one perhaps didn't appreciate that enough while she was alive. It's going to take time obviously and I suppose we did take some small steps whilst he was up so things may look better in the long run.  Well see. But as I say above, when I'm faced with things like hospital, my focus really narrows down to me and me alone.  Now I'm out though I can feel myself starting to open up (and hence my ability to start writing the blog again). Hopefully I'll regroup for the rest of this week while I finish off the radiotherapy (last treatment is next Monday) and then relaunch myself on the world next week (I've booked my hair cut for next Tuesday just to make sure I'm fully prepared!). Watch this space fuckers.....

That's all. J x

Day One Home

Slept 10 hours last night. Feel weak but better than I did before I went into hospital. Dad on his way up despite some travel disruption in Wales. Flat in some sort of shape to receive him mainly as a result of the efforts of DD (and Hilda). Football on telly at 5 so he and DD can both sit down to watch that. Dad here until Tuesday (it's his birthday tomorrow) so expect scant updates here before Wednesday as likely to be busy. Start radiotherapy again Monday for another 6 sessions. But doing OK all things considered and thanks for all your good wishes. J x

Home

Finally. Need to sort discharge procedures at The Christie because it crosses over from being annoying to actually compromising patient care in my opinion. Will be working on this once I get some strength back after radiotherapy. 

But thank you all, and especially Denise, for getting me this far so far. J x

Waiting

Worst part now. Waiting on take out drugs. Not only that but because they need the bed they've moved me off the ward into the "discharge lounge". Well, it's as far away from the idea of "lounge" as it's possible to get. Essentially it's 5 chairs they had a budget for but no room to put them in, stuck in a corner and surrounded by big signs saying "DONT GO HOME WITHOUT YOUR DRUGS". It's a bit like the waiting room in Beetlejuice except you don't have the numbered tickets to count you down. We could be here forever. I'll let you know. J x

Seen It All!

Debbie with the Big Wigs! Of course I've seen the very lovely Debbie in many situations before (both at work and on coffee breaks) and with some fairly Big Wigs too (young Sean is, after all, Head of Head & Neck and that's not to be sneezed at) but this time she was in a long train of really important looking people one of whom actually had a suit and tie on and trust me you've really made it in the NHS when you wear a suit and tie. Unless you're a woman of course (sorry Yvonne) but I've not really worked out the official Woman's Heirarchical Dress Code for doctors yet. I suspect though that it starts somewhere around Next and progresses ever upwards to proper understated (proper, not diffusion line) DKNY. All help gratefully received though. 

Anyway, Debbie was in the tail of the Slevin Satellite speeding through The Christie firmament. But do you know what? She may have been positioned in the tail but she sparkled every bit as brightly as the head. And you just knew that if you wanted a sensible answer to a sensible (or indeed nonsensical) question, she was your port of call. And she has now, indeed, just spent far more time than I deserve helping me out with my education programme for my new student nurse (Elanor, 3 days on the job, heart in the right place but doesn't know her way round an Obs Chart - or rather, now knows her way round an Obs chart) and answering all my questions. 

So I just want you all to join me in saying a great big THANK YOU to the very lovely  Debbie for her very lovely help. My very lovely Christie experience would not have been as very lovely without her. J x