Ruby Fucking Turner

Again. Just sayin..... 

Not All Bad

Pretty boy with pretty hair on now. And I like the drummer's top......?

Special Treat

Here's me and my old da on NYE.... :-). J x

Happy New Year Everyone

Welcome to 2014.  What do we think that 14 will have that 13 didn't?  And what resolutions will we be making this year that we didn't last year and what will we be sticking to that we didn't before? So let's take a moment....

Firstly we need to decide whether or not we're going to take it seriously or not.  If you don't really mean it then don't kid us or yourself that you do. Cut the bullshit. Really, I mean it.  Quit joking around and make a decision that counts.  Decide that you're going to do it and mean it or just fuck off.  

OK so we're going to talk here about stuff that counts.  Personally I want to get more serious about my Macmillan stuff.  So far, although I've been serious, I'm getting the feeling that not everyone else has been.  The NHS people are just ticking boxes - yes we have a "patient" on board and so we can say we've consulted widely in the community: fuck off, no you haven't.  The Macmillan people are saying the same (or at least some of them are; to be fair some Macmillan people are good and are trying to do the right thing).  So where do we go from here?  First of all I need to make more noise than I have done so so far.  I need to make sure that meetings are arranged so that People Affected By Cancer (PABCs) can attend the meetings - i.e. not just office hours that fit in with what is convenient for NHS people.

I need to make sure that PABCs are in at the start of things not at the end e.g. when deciding on what a "cancer champion" role looks like, PABCs need to be part of the discussion at the outset rather than at the end being presented with a "this is what we think the role looks like what do you think" fait accompli....

Oooooooh, my dander is up now.  But I also need to fit this around what my treatment schedule looks like while also taking care of my Dad and all the other stuff (social life etc) that needs attending to.  And, of course, sorting out my Jaguar.....

Anyway. Getting late now.  So I'll just wish you all a Happy New Year.  It's my second actually as we celebrated Adelaide's New Year earlier... Hope 2014 is fab.  And see you then  :-) Jx

Back in Swansea

Travelled down early yesterday morning. Roads were really empty and I made good time.  Weather was fine until I hit Wales (obviously) but was fine again in Swansea. Indeed it was a beautiful day in Swansea and we couldn't have asked for better for scattering my mother's ashes which is what we did yesterday afternoon.

We did it in the field we own above the farm where we used to live (we retained this one field). It has beautiful views and you can see the farmhouse from it.  But the main reason is because it's the field where we scattered Sally's ashes and where mine and my Dad's will eventually be scattered. 

We'd invited Mary and Barrie along and we were both glad they were there because it was a very emotional time. Mary will now arrange to obtain the four trees we want planted in the field (3 green beeches and one copper beech - to represent the black sheep in the family, me? - which we're doing because it represents the mix of trees we planted at the farm). 

In the evening we went for an Indian meal with some old friends of the family and it was good to catch up with them.  

Today is another beautiful day so we're off to the Botanic Gardens for lunch. Yay. And that's all for now. J x

All Person Alert

Sharknado is currently showing on Syfy channel. J x

Marooned

So the weather is still too bad to travel so I'm staying an extra night in Manchester. Back to Swamsea tomorrow hopefully. J x

Merry Boxing Day from Manchester

Turns out I couldn't survive without that pill I'd left in Manchester anyway so have travelled up to pick them up.  Back down to Swamsea tomorrow (depending on weather - storms are forecast). So apart from pain (waiting for pill to kick in) everything is fine. J x

Catching Up At Xmas

So had a very bad night post-cinema on the eve of Xmas eve.  Was up during the night being very sick and feeling somewhat out of it.  Not a good sign.  There was a half drunk martini on the coffee table but I have no recollection of how much I'd had to drink following my trip to the cinema.  I can't think it was that much but clearly it was over the limit for my new drug regime so I need to be more careful (for which read sensible) going forward.  To be honest it felt like I'd had food poisoning but given that I'd only eaten a tin of baked beans with some frozen chips this seems highly unlikely.  Will discuss with Dr Y when I see her on 07/01 anyway just in case it's significant.

The consequence of this was that I overslept on Xmas eve and didn't wake up until 0930. Given that I normally set off for Swansea around 1000 and I hadn't packed yet we clearly had a problem Houston.  Anyway, managed to get everything (almost) together by 1100 and so set off then.  Unfortunately had forgotten one of my painkillers and my laxatives.  The latter is easily solved either by reference to my parents' extensive pharmacopeia or by over the counter remedies.  The former is a bit more problematic in that I'd need a prescription and the person who has access to my flat in Manchester and could post the damn things to me is half way round the world in Australia.  Anyway, have coped so far and have decided to carry on coping as long as I can before having to make contingency plans/journeys. 

Otherwise the journey to Swansea was uneventful. A couple of sharp showers and a bit windy but good otherwise (i.e. no lorries). Got home at a reasonable time and put up the tree lights which worked magnificently and have continued to work.

Xmas Day itself was a success logistically.  Lunch went very well (one incinerated Xmas pudding aside) and the day panned out as well as we could have hoped for.  Hopefully things will continue to go well.  Fingers crossed.  And I'm off to bed now. DDD is en route to test number 4. Let's all wish her luck with that... :-) J x

Merry Christmas Everyone

And The Points Go To....

.... Madame La T!

It was all father's fault. He'd heard that Aldi mince pies and Xmas puds were the best throughout the land. I was duly dispatched. :-( J x

Bonus Points...

.... for anyone who can tell me where I've been shopping this morning....

Countdown To Christmas

Lovely evening yesterday with the birthday girl (Lesley), Sara and Gill. Joined later in the evening by the redoubtable Mrs T.  Attempt at Skyping Australia with all of us there failed as DDD (Denise Drury Downunder) had used up all her free wifi time for that day googling the latest plot twists on Coronation Street.

Mrs T remained here when the others left.  I'm pleased to announce that I managed to sleep for 7 hours overnight. Hopefully this was down to the new drug regime rather than the tequila I consumed the night before as an accompaniment to my veggie chilli. I was rather disappointed with the chilli I have to say although the others said they liked it.  Indeed both Lesley and Sara took doggy bags home with them.

This morning it was a quick whizz around the Xmas markets before Mrs T left me to fall asleep on the sofa (it's the drugs, honestly). It is actually the drugs so I'm going to have to be quite careful about what I take and when, when I'm thinking of driving.

This evening it's the cinema (The Hobbit - 2D naturally) followed by tea at Dimitris accompanied by the svelte gorgeousness herself, Michele. I'll let you know what I thought of the film tomorrow (assuming I don't fall asleep). J x

Christmas Twitter

Twas the Saturday before Christmas and all through the town people were using the phrase "it's Christmas!" to justify their awful behaviour.

I would kill for a couple of days off with my family. Unfortunately, I've got 3 weeks.

Last minute Christmas shopping not going well. I just can't seem to get ANYTHING with this arcade crane grab machine.

"But I can't conquer China, it's way too big..."

Now Genghis, what do I always say?

*Sighs*

"I'm Genghis Khan, not Genghis Khan't"

Not really Xmas that last one but it made me laugh..... J x

Please Note

For those who accuse me of not being positive enough about my treatment/prognosis, I'm updating my Xmas card list ready for next year.... J x

Research

So looking up Pregabalin (one of my many new drugs) on the internet. According to Wikipedia, one of the side effects is "abnormal walking". Please report me to the police immediately if you notice me walking abnormally.  It also, apparently, has an effect on libido which can be increased or decreased.  Please be aware of this in case I start humping your leg when you visit.... :-). J x

Ear Zoom 2

It's like a really cheap nasty hearing aid. But it's fucking massive. And ugly. And they want you to wear it in a restaurant and fishing, apparently... Can you hear the fish talking to each other with Ear Zoom? It's huge. It's like those cybermen things they wore in Dr Who. And now they're showing people using it to snoop on their neighbours..., I love it!

Ear Zoom

No really....

Confused

How does a ring at £409 make it onto a programme titled "Jewellery Under £30"? Oh I see, £409 is the recommended price. But you can have it for £23. Wow. Thats some deal. I might need like, 10 of those....

Steam Cleaners

Does anyone have one? Do they work? Let me know. J x

Watching Shopping TV

You just know that when they say "it's going to be fashionable for a very long time" that it's the most hideous thing you've ever seen and "It's on sale until 2016 or until we run out of stock" means they have one item and it will never, ever sell. :-) J x

Never Seen Anchorman

But since Anchorman II has a) been made and b) got good reviews I'll give it a go on BBC3 tonight.

In other news, saw Dr Yvonne today. Good and bad news but mostly good.  I've been given a sackful of new painkillers and apparently I'm nowhere near my maximum dose of morphine. That cheered me up. Morphine is my best friend. And hopefully these new painkillers will control the pain. And I can drink sensibly... :-)

New cancer drug trial likely to kick off (in practical terms) at the end of January. Trouble is we may need to intervene on me before the trial starts. That would mean taking the regular chemotherapy.  Those I've talked to (and maybe I've put it on the blog) will know that the average response rate for the proposed chemotherapy drug is one in ten.  Those aren't good odds. But it's an average. Most people are older than me.  Most people have a poor response to the initial chemotherapy (three months symptom free) whereas I'm over twelve months symptom free.  A lot of older people have lots of other illnesses at the same time but luckily an addiction to prescription painkillers and vodka martinis isn't classed as an illness in these enlightened times.  In fact, Dr Yvonne thinks my odds are more likely to be 50/50.  I can live (no pun intended) with those odds.

Can't say at this stage how much extra time I would buy if the treatment were successful (everyone reacts differenly etc) but Dr Yvonne thinks it would be less than 12 months but maybe not a lot less. And in any case, even if I had no treatment at all she reckons I'd have a further 6 months from now.  So effectively I'm being asked to gamble half of that 6 months on chemotherapy which would make me feel ill - slightly different side effects to the last lot: hair falls out (I already have the hats), very tired and fatigued, muscle and joint pain (hence the need for strong steroids which means, boo, weight gain).

Judgements will be made at my clinic appointment on 07/01 (offers of accompaniment gratefully accepted as DD won't be back by then) as to whether we need to start chemo immediately or can wait and go through the screening process for the drug trial. And even if we wait I'm not guaranteed to be accepted on the trial.

Cancer is growing but hasn't spread to liver, kidneys or brain yet which is good news.

And now it's time for the film so I'll love you and leave you. Will blog again soon I promise. J x

P.S. Thank you to Fig for the beautiful bottle of Grey Goose (another of my close friends) which arrived in a beautiful oak presentation box that, unfortunately, looks a bit like a coffin!  Not as bad as the Funky Pigeon card I received from Toby though which wished me an "exiting" Christmas...!

That's all. J x

My Mum

I gave a eulogy at my Mum's funeral.  Afterwards a lot of people said they were moved by what I said.  After some careful thought I've decided to post what I said on my blog.  In that way - as in the many mentions she already gets on this blog - her memory will be preserved long beyond my life or that of my Dad.  And that brings me comfort.  I'd prefer it if people didn't comment on this posting. Thanks.

Mum, Llanelli Crematorium, 9 December 2013

I want to talk to you a bit about my Mum. She is... was... a very 

special person to me and my Dad and my sister. And if the number 

of cards we've received since she died is any kind of measure she 

was special to a lot more people besides.

My Mum was both a very ordinary and a very extraordinary woman. 

She was ordinary in all the ways one wants a Mum to be ordinary: 

she liked a glass of wine (usually two) of an evening; she enjoyed 

watching Bargain Hunt, Flog It and just about any other television 

programme that featured antiques; she looked after my Dad and me 

and my sister and was always there for us when we needed her; she 

loved nothing better than pottering around the garden and many 

other ordinary things.  And it is for these ordinary things that me, my 

Dad and Sally loved her and how we will love and cherish her in our 

memories.

But my Mum was also an extraordinary woman.  And this manifested 

itself in her inner strength and her insane competitiveness. Anyone 

who has ever played a sport with my Mum will know how competitive 

she was.  And there were few sports in which she didn't compete 

and excel. At school she participated in netball, hockey, tennis, 

rounders and, I've recently learned, gymnastics. But she didn't only 

participate in these sports she threw herself into them and did so 

with such skill and enthusiasm that she was captain of most of the 

school's sports teams! Once she left school she added swimming to 

her list of sporting accomplishments. Latterly, of course, she took 

up bowls and badminton. And once again she ended up being 

"skip" for her bowls team.

Indeed her competitive spirit also tipped over into her family and 

personal life - and never more so than at Christmas when all the 

family, including visitors, would be corralled into playing charades 

and "Up Jenkins" (I'm not sure one could get away with calling a 

game Up Jenkins these days but those were more innocent times...). 

Most of us dreaded it but no-one was allowed to sit it out and woe 

betide you if you didn't take the games seriously. Indeed I think Dad 

still bears some emotional scars from those times...

And I'm sure I don't need to mention the games she devised for the 

summer parties at the farm. Jeux Sans Frontières had nothing on 

my Mum. Who can forget the poor lady who, whilst reversing the sit-

on lawn mower through a gap created between two bales of hay, just 

carried on going, unable to switch the tractor off or get it out of 

reverse as she disappeared over the hill (whilst everyone else 

collapsed in heaps of laughter). And who can forget, nor indeed who 

would want to, Peter Dawson in a lion mask being "tamed" by David 

Jones.

But what I think makes my Mum unique and special is the way she 

managed to combine the ordinary with the extraordinary. Although 

very competitive she was also a great team player. I've been told that 

at school everyone wanted to be on Janet's Team. And latterly, 

although she was feeling breathless she insisted on taking part in a 

bowls match because she couldn't let the team down. She told Dad 

that she would be fine and would sit down when she wasn't actually 

bowling. But she didn't. She stood the whole time and played the 

full 2 hours. And won the match. And this was on the day before she 

was taken into hospital. As I said, an extraordinary woman.

She was also the rock on which our family was founded. She was the 

loving mother and wife - and no one could ever doubt how much she 

loved us - the peacemaker, the negotiator (and trust me some of the 

"discussions" between me and Dad needed to go to arbitration), the 

home maker, the care giver, the core of our family life.

Dad said to me shortly after Mum died that he felt like a ship that had 

lost its pilot. And I know exactly what he means. And judging by the 

number of people here today and the long distances some of you 

have had to travel plus the huge number of cards and expressions of 

support we've received, I think you know what he means too.

Well we can't replace the pilot nor would we want to. But we will 

need help in steering our ship over the coming weeks and months 

and years. And to extend the shipping metaphor further it's you we'll 

be looking to to provide us with navigation charts and weather 

reports and to act as a friendly tug if we look like we're steering too 

near the rocks. And I know you'll do it gladly in my Mum's memory. 

But that's for the future.

For now I'd like to thank everyone for coming today to join with us in 

saying goodbye to Mum. Goodbye Mum, you were a very special 

person in our lives and we will miss you every hour and every day 

from now on.  

Thank you.

I Don't Care. I'm Having A Martini

And that's all there is to it.

OK, but just the one, nag, nag, nag.......

To Sleep, Perchance to Dream....

Slept relatively well last night. About 6 hours.  No idea why. Perhaps just being back in my own bed? Have only been managing 2 or 3 hours at any one time in Swansea before the pain wakes me up.  I need stronger painkillers and treatment.  Anyway, no point worrying about that now, will discuss with Yvonne tomorrow.

Dad seems to be doing OK at the moment all things considered. But it's really hard for him. I'm really proud of him and the way he's talking about getting on with his life.  I think he needs a dog and that the dog should be a miniature Schnauzer (he and Mum looked after Sally's miniature Schnauzer, Daisy, after she died and they're such a lovely breed). Would keep him fit and give him companionship.

Looking forward to an extended stay in Swansea over Xmas and New Year. Will give both of us an opportunity to remember and talk about Mum and also to consider the year ahead and plan for the future.  Will be back in Manchester on 02/01/14. 

In the meantime, seeing the lovely Ms Boyd for lunch today, writing and posting my Xmas cards, dropping off my dry cleaning, and generally being busy.  Same tomorrow with visit to Bents, oncologist and hairdresser. Lesley's birthday on Saturday plus royal visit from her highness The T and then cinema on Sunday (The Hobbit) and Monday (Gravity). I'll be glad of the rest in Swnsea :-). That's all J x

The Times They Are a Changing

Daytime will last one second longer on Sunday than it did on Saturday. Here comes summer people....

Had dinner with Toby tonight and we came up with a great new party concept. Watch this space.... 

Seeing Yvonne on Friday and having my hair cut. I could just wait until the chemo makes it fall out but I like gossiping with my hairdresser too much :-)

Still in bloody pain and not drinking. These things are unrelated. 

That's all. J x

Sorry For No Posts Recently

We're both doing as well as can be expected at the moment.  Just taking one day at a time.  Have been to town today for some shopping and then out for a meal tonight.  Peter and Jean called round this afternoon.

Pain still bad which is why I haven't felt up to blogging. And this is even after I've doubled up on the 

patches.  This worries me a bit but we'll see what Yvonne says on Friday.  

Driving up to Manchester on Wednesday. Nothing much planned for tomorrow.  Apparently not all is going well with the cricket.... That's all for now.  J x

Random Posts

Still lying.... So, anyway, what has Scotland been up to?  Why this: 

The woman deserves a job in Harrods, never mind a charity shop in Coldstream. I love Little Red  Riding Hood, although I'll admit I'm struggling to see the wolf.  I was promised a wolf.... Even Disney managed a wolf (see Johnny Depp in Disney's upcoming Into The Woods film). But given the budget (i.e. none) the girl done bloody marvellous. J x

Random posts

OK so I lied. Not sure where fentanyl falls in the scale of opioid painkillers but once I reach diamohine then I'm effectively on heroin. On a prescription. Yay. J x

Random Posts

Sorry, last one tonight. Here's the gang at the funeral.... J x

Jaguar F Type

Just so you know what I'm talking about.... :-) J x

Random Posts

Does anyone know anything about car leasing?  I'd like to get rid of my current vehicle (a 2001 Astra which I love but don't want to take to the grave) and lease something fabulous like a Jaguar F Type. I just don't know how I go about that and whether or not my prognosis (see earlier Random Posts) will have an effect.  May need to do it all in DD's name... :-) J x

Random posts

So have spoken to Dr Yvonne this evening.  The scans show that the tumours in my lungs have grown.  They're still small (the largest is 1.6cm apparently) which means that we're looking at starting treatment (chemotherapy) in January.  This may be too soon for me to get on the trial though (I need to talk to Dr Y about this as I didn't have time on the phone today).

Also, the tumour near my ribs that was previously treated with radiotherapy has grown again.  But given that I've already had radiotherapy to this area, I can't have it again.

But she reckons that the chemotherapy may have a better than one in ten chance for me. Given my age, the fact that I responded well to the original chemotherapy and the (for lung cancer) relatively long symptom-free period I have had then my chances will be better.  I need to talk to her about this and find out the exact details though.

In the meantime I am to get fentanyl as an analgesic.  This is stronger than morphine and can be delivered via a skin patch which should mean I won't be be woken in the night by the pain (as is currently happening). That will be nice.  I'll still be able to top up with morphine for "breakthrough pain" though.  The only downside is that I'll need to lay off the alcohol whilst we sort out the levels of fentanyl needed. Boo. 

In prognosis terms, I probably won't see next Christmas but who knows..... I may yet make Disney's Into The Woods (which I'd really like to do).  J x

Random Posts

So the funeral has happened.  It was a very difficult day for both me and my Dad and, indeed, for anyone who knew my Mum.  But everything went without a hitch for which we're both grateful.  

It was great to see people who had travelled a long way - Londn, Brighton, Manchester & Australia.  Thank you so much.  Coming to support me and my Dad and to say goodbye to my Mum meant so much to me.  I will love you forever for it. I'm sure I don't say it often enough but I love you guys.  And I really appreciate all you do for me.

I would also like to thank those who were, for various reasons, unable to travel but nevertheless sent messages of support (this means you Scotland - plus various others).  Again, it really helped me and my Dad get through the day.  Thank you.

J x

Quickly

Funeral went well. Back in Manchester tomorrow and will update fully then.  J x

Update

Still in Manchester. Have seen GP this morning to get lots of controlled substances in bottles.  He asked me whether I'd ever considered suicide.  I said that depended on whether he was going to write me a prescription for controlled substances...

Have CT scan at lunch time.  The ever effervescent Jude is taking me there and back.

Have started writing my tribute speech for the funeral but it's really difficult.  And I've no idea whether I'm going to be able to manage it on the day. I know it would have meant a lot to my Mum though and it will mean a lot to my Dad so I'll get through it somehow. We've chosen a lovely family photo for the front of the order of service.

Don't think I've mentioned it before but there are flowers from the immediate family only.  Otherwise, donations to Cancer Research UK c/o St James Funeral Home, St James Gardens, Swansea SA1 6DT (in the name of Janet Lewis).

Luckily have not had much time to just sit and think.  There's just so much to do when arranging a funeral.  It's insane.  Not looking forward to the period afterwards though.  That's when it wil really hit home I suspect.  But the there's Xmas and New Year to get through and then, in all likelihood, I'll be starting treatment so I may not have much time afterwards either.

My whereabouts, in case you need to contact me, over the next few weeks are -

07/12 - 10/12, Swansea

11/12 - 14/12, Manchester

15/12 - 17/12, Swansea

18/12 - 23/12, Manchester

24/12 - 02/01, Swansea

03/01 - ?  Manchester

And that's all for now.  J x

Wow

Just had a yellow wagtail on my terrace. Not had one of those before. Noticed it during a break in my laundry duties... :-) J x

Probably Racist...

...so sorry if anyone is offended, but this from Twitter: 

Sorry seems to be the hardest word to say. Unless you're Chinese, then it's 'squirrel'.

Yeah Well...

...,Mr Daley's boyfriend may be all that but he's not cute. And that's quite an age difference. Will Young would be a better match. Is he free does anyone know? But even though I'm jealous as hell I wish them well. J x

Twitter Genius

Last year I put all the christmas decorations up myself. Then my mum had to take me to the hospital so I could get them all taken out.

Incidentally, blog has now passed 85,000 hits. J x

Back In Manchester

Journey was good, roads clear and not too many roadworks.  Hilda has cleaned so place looks great. 

Not seeing Toby tonight (he's not feeling great, poor love) so catching up on recorded TV. Having an early evening martini to just take the edge off.

Tomorrow is a list of chores as long as my arm and then seeing the lovely Lesley for cocktails in the Restaurant Bar & Grill.  Have spoken to Dad and he's doing OK all things considered.  Will phone him later too.

That's all for now. J x

I Love My Dad

Just saying... J x

Funeral Travel - Some Ideas

For people travelling from Manchester there is a train direct to Llanelli.  The station is about 4 miles from the crematorium.  A local taxi firm is Llanelli Cabs on 01554 741888.  

If you intend coming to the reception at Sketty Hall afterwards then let me know and I will find you a car that is travelling from the crematorium to Sketty Hall.  You can then catch the train back to Manchester direct from Swansea.

For those travelling via London there is similarly a direct train to Llanelli and the above instructions can be followed.

For those travelling from Scotland, I'd set off now if I was you.... :-) J x

Whereabouts

In Swansea today. We registered Mum's death with the registrar this morning and we're seeing the Funeral Director at about 1600 this afternoon to discuss arrangements.  I'm then back to Manchester tomorrow and doing chores for ever followed by a CT scan on Friday at Wythenshawe. The lovely Jude is taking me to that. Saturday is back to Swansea and then of course it's Mum's funeral on Monday. Me and Dad have an appointment at the solicitor's on Tuesday. Not sure what happens then but there's a Macmillan meeting in Manchester on Thursday.

In other news, we've exchanged contracts on the Brighton flat and we complete on Thursday so it will be good to have that finally sorted.  

Once again thank you everyone for your kind thoughts and good wishes.  If anyone needs to know details about the funeral etc then just give me a ring.  That's all. J x

Tom Daley Comes Out

Yay. J x

Funeral Details

So barely had time to sit down since mum died - loads of visits and phone calls and arrangements to make.  This is good in some ways as it hasn't allowed me or my Dad time to get depressed but it has also been very tiring.  

Mums funeral will be on Monday 09/12/13 at 1330 at Llanelli crematorium (SA14 8BX) followed by a reception at Sketty Hall (SA2 8QF). Family flowers only but donations to Cancer Research via St James Funeral Home (https://www.google.co.uk/search?q=st+james+funeral+home+swansea&ie=UTF-8&oe=UTF-8&hl=en-gb&client=safari)  

This is all very practical stuff but it's all I'm able to put on the blog at the moment. Indeed I'm not even sure myself what the hell I feel today and I certainly can't begin to put it into words.  I'll need to get stuff down in writing before the 9th though as I want to speak at the service at the crematorium and, maybe, once I've done that I'll be able to put something here about what I'm feeling at and how truly wonderful my Mum was.  Sorry, I need to stop now.  J x

Very Sad News

Mum died in the early hours of this morning. It's a release because she was in a very bad way with her breathing but a shock nonetheless. Both me and my Dad had hoped that she would rally a bit once she was home but she just didn't have the strength. But at least she was at home (which is what she wanted) and I was home too (which both of us wanted). 

Not really up for conversation at the moment but will blog further in the next few days. Thank you everyone for your good wishes. J x

Twitter Gems

Yoda's full name is Yoda Layheehoo

Lost control of a meeting? Then use big words, even if you don't fully understand them. It will make you appear a lot more perambulator.

Dead German cats have nein lives.

And finally a sneaky trick for filling out application forms: 

"Over the word limit? Join words together with hyphens and then make the hyphens white." 

(Please note this blog in no way condones the use of sneaky tricks) 

Twitter Again

The first rule of Narcolep

From Twitter

My boss said I should work smarter, not harder. So I put a tie on and went home.

I Love The Taste of Morphine in the Morning

Just saying..... J x

Where We Are Now

Me first. Saw Dr Yvonne's registrar today (accompanied by the lovely - and svelte - Michele). The X-Ray doesn't provide a clear enough picture of what's going on - it could be radiation fibrosis (from the radiotherapy I had a few weeks ago) or it could be the cancer growing. So they're going to give me a CT scan to get a clearer picture and have given me an appointment in 4 weeks time (Xmas Eve!). They'll call me in if there's anything we need to get worried about.  The next anti-PD1 trial starts in January so I should expect to start receiving treatment then. So that's mostly good - especially as they gave me a shit load of morphine and told me I could, more or less, take it as often as I like. The only downside is I have to take a laxative at the same time since morphine bungs one up somewhat apparently.  Incidentally, can anyone recommend a decent laxative? The one I have on hand - Laxido - tastes foul.  Ta.

Now my Mum.  She's not doing too well. Pain, fatigue, breathing difficulties, loss of appetite and other "classic" cancer symptoms are conspiring to make life really tough for her.  Not helped one iota by being in hospital.  Luckily they have decided to discharge her on Thursday on the grounds that there is nothing more they can do for her in hospital.  Which is good news in a way as I'm convinced she will get a bit better once she's home.  Certainly Dad and I will do all in our power to make sure that happens. And even if she doesn't improve physically her spirits must improve by being home.  Dad has arranged all the necessary equipment - hospital bed, special mattress, wheelchair etc - to be provided at home and, indeed, it is in place even as I type.  Well done him. I'm going home Thursdy and will play it by ear as to when I come back to Manchester depending on things like the CT scan etc.

So there you have it. I'll be up and down the M5/M6/M4 quite a lot in the next few weeks.  Catch me when you can. That's all. J x

I Like Sadique Khan's Hair...

... but not his politics.  Which is a shame.  Good hair and good policies should, in an ideal world, go together. #bbcqt

I Think I Love Jeremy Hunt

There I've said it.  J x

Ha ha ha

Hull pledges a ‘shitload’ of culture

Mother

So the drain has been removed and they've tried the talcum powder again. I think this is a good sign because it means that, currently, no more fluid is accumulating and they also feel she's strong enough to have the procedure. Hopefully it will work this time and she won't have to have a permanent drain fitted.  It also means that they must be happy that the infection has cleared up.  Mum says she's in some pain though but it was expected that the procedure would cause some discomfort. Hopefully she's getting plenty of painkillers.

And on the subject of pain, the pain in my back has ratcheded up a couple of notches. I've spoken to Yvonne and we've brought my clinic appointment forward by a week so I'll be seeing her next Tuesday.  In the meantime I'm back on the morphine to help cope.  The plan was for me to go home tomorrow and come back on Monday ready for clinic on the Tuesday but I'm not sure now whether I can make the journey.  I just drove to Sainsburys and that caused me quite a lot of discomfort so I'm not sure how I'd cope with 5 hours behind the wheel.  I'll talk to my Dad and make a decision tomorrow morning.

On a happier note I had coffee yesterday lunchtime with the lovely Sara and then post-work (for her) drinks with the lovely Lesley. It did get a bit drunken though - certainly on my part - even though we went for a meal at Piccolinos.  Hopefully I didn't disgrace myself.  I didn't drink too many martinis though (the definition of "too many" is, apparently, 20 according to my arbiter in these things, Ev). Certainly the alcohol helped with the pain and I was able to sleep.  In fact, providing I don't move too much the pain is manageable. It's when I try to do stuff that it hurts. Hopefully the morphine will help.

And that's all my news.  Have an appointment to have my hair cut at 1800 followed, I think, by a Skypeing session with down under.  J x

Also from Twitter

Yay

Women bishops. Why the fuck did it take so long? 

P.S. Thanks Lesley for a fab night out. J x

From Twitter to lighten things....

I must be ill - I thought I saw a sausage fly past my window, but it was actually a seabird. I think I've taken a tern for the wurst.

Not Good News

So we saw Mum's oncologist, Dr Parker, on Monday.  She told us there were no more treatments that she could offer Mum.  She said the fact that her symptoms had returned so quickly following the last round of chemotherapy meant that her cancer had become "platinum resistant".  This means that cisplatin and carboplatin, the two chemotherapy drugs she had previously received, would no longer work.  There are other chemo drugs available but they only have a one in ten success rate and Mum is in no condition to undergo chemotherapy at the moment anyway.  And Dr Parker doesn't think that she will get to the stage where she would be strong enough to give them a go.  We were all stunned.  We had gone to the appointment expecting to hear what the plan for treating Mum would be and to be told that there is no plan and no treatment is devastating.

We asked what the prognosis was and were told that it isn't good.  Typical of Mum her initial response was "who is going to look after Dad". 

Ironically Mum seems to have got a bit stronger since the meeting, so much so that they are looking at repeating the pleurodesis procedure (the talcum powder) to see if it works second time round. I'm fairly sure this improvement in her condition will be down to the fact that the antibiotics are dealing with her infection.  Her breathing is also getting better as the drain works.  But her fatigue is still intense and this is a side effect of the progression of the cancer.

Dad and I went to the Maggie's Centre they have on site at the hospital to find out what we can expect and what happens next and Dad has made an appointment to go back and have a chat with them tomorrow.  Dr Parker has made contact with the palliative care team from Morriston Hospital (Mum is in Singleton Hospital) and they have already been in touch with Mum.  And that's where we are.  I'll update you as we learn more.  

I've come back up to Manchester for a couple of days.  I'm currently experiencing some back pain but don't know whether it's cancer related or due to the stress and tension of the situation.  Or just the fact that I've spent a week in Swansea sleeping in a strange bed. I've talked to Dr Yvonne though and she wants me to phone her on Friday for an update.  Should have been at Sweeney Todd tonight but just couldn't face it.

And that's all for now.  J x

Full Blog Tomorrow

After we've seen the consultant.  J x

Watching Buzzcocks

Is Catherine Tate pissed? 

Another Day, Another Outcome

So my mother has seen a doctor on the ward (not her oncologist yet) who says that she will need to have a "permanent" drain fitted.  This is because the fluid is continuing to accumulate despite the insertion of the talc.  If you recall I too was sent home with a drain still fitted following my surgical biopsy in Wythenshawe although, to the best of my recollection, no-one mentioned the word "permanent". But nothing drained from me - even though I had no talc - so the drain was removed after a number of weeks.  Presumably this could happen with Mum in that the fluid dries up of its own accord. We'll have to see.

It does mean though that Mum needs to be transferred to a different hospital to have the permanent drain fitted under general anaesthetic.  I'm not sure how this differs from the usual drain she had fitted before which was done under local.  In fact, I seem to recall that we used the same tube for draining with me in hospital and when I was sent home.  But mine was originally fitted under general anaesthetic because I was having surgery anyway.  Maybe I need to look back in the blog. Indeed I will do that now.

Just checked back and the tubes weren't the same. One was referred to as a "drain" and was attached to a big bottle and the other was called a "pleural catheter". Unfortunately I haven't documented the process for the insertion of the latter - I was too busy being amusing about morphine - and so we're none the wiser.  I think I'll ask to see the doctor this evening so I can understand fully what is going on.  

Dad seems OK which is good and they're both clearly glad that I'm home to help,out - as indeed am I.  

I'm feeling OK and just glad they have series record in the house so that I can keep up with Masterchef because it falls slap bang in the middle of visiting time... :-) That's all for now.  J x

P.S. Have spoken to Denise who is doing fine although is sleeping a fair bit at the moment.  Apparently it's not the prospect of watching cricket that is causing her to drop off.  And it's Port Douglas she's in, not Dawson's Creek. Apparently it's very pretty with a beach. 

So I'm in Swansea...

...and mother is back on Ward 8.  She seems relatively content with the situation though and so am I.  When one has breathing difficulties, hospital is the best place to be.  They're giving her oramorph for the pain and I expect they'll fit a drain tomorrow.  She's so brave and lovely.  

Father is exhausted from today and so I've sent him to bed early.  He'll be fine tomorrow after a good night's sleep. 

Not decided how long I'll stay down.  Original plan was to come back at weekend but I'm wondering whether I need to stay for the oncologist's clinic on Monday.  Let's see what happens this week.

Have spoken to Denise.  All seems tickety boo over there.  She's staying at Dawson's Ceek or some such and apparently it's very pretty.  Good for her.  

Also exchanged loads of hysterically funny (mine, not his) texts with Fig tonight.  He was watching Dr Who (yawn - not even a new one) and I was watching a programme about just how many gay people are involved with staging Charlie & The Chocolate Factory. It's almost likes it compulsory (apart from Sam of course). I so need to see this show.  And Matilda.  And The Book of Mormon.  And possibly Satyagraha (given that I've had to give up the Magic Flute to be in Swansea - The Queen of the Night is in a wheelchair apparently - would have loved to see that). I loved S last time I saw it - with my uncle and aunt in London (he's now sadly deceased and my Aunty has had a stroke). I may just see if I can arrange that and then maybe rearrange my Mexican meal in Leicester Square too... Yay.  

That's all. J x

The Madam Has Landed.

Australia now has a Drury on its soil. Good Luck Australia! J x

#Cantblieveihavenovodka

No really I can't. J x

Havin' A Tequila

Just saying. #Helpiverunoutofvodka

"You Don't Want To Look Stupid"

...said Vinny from Manchester. BUT LOOK AT YOUR FUCKING EARS! 

I Got Two Questions...

... on University Challenge. Just Saying. Now bring on Masterchef....

In other news, mother sounding a bit brighter tonight than she did this morning but she's still not right. And she's watching tennis rather than Masterchef. Sometimes I think I was adopted. 

Nothing gets tougher than this.... J x

Update

So I'm back in Manchester (I came back for some Macmillan meetings) but it sounds as though my Mum has actually got worse since she left hospital rather than better. Her breathing is difficult and she may have some pressure sores (don't start me on the tone of the letter I will be writing to the ward over the fact that they didn't once check her for these).  Anyway, that's not my primary concern at the moment.  I've asked Dad to get in touch with Mum's oncologist but to go straight to A&E if things get any worse.  Likelihood now is that I will cancel everything after today - tea with Jude, Macmillan, lunch in Liverpool, Swan Lake, cinema, The Magic Flute at ENO, Mexican lunch in Leicester Square, day out in Chester, flat warming - and just go home. I'll let you know.

In other news, Denise boarded her flight safely. She's also now landed in Dubai where there is a one hour delay.  She's currently sat in the Business Class Lounge enjoying a meal of salmon and stir fry with free wine.  Nevertheless she manages to complain that it's like a cattle market!  Oh how quickly we adapt... One can only guess at the hell that must be Economy.

Saw her off at the airport - I had to drive there in my own car whilst Denise was chauffeur driven - I wasn't allowed in the limousine due to insurance problems or something.  It's lucky I was there because when I phoned her to say I was waiting by the Emirates check-in but couldn't see her she realised that she was attempting to board the wrong airline (Ethiad)!  She puts this down to being a City supporter rather than being giddy with excitement.  Anyway, here we are having a coffee just before she went to the Departure Gates. 

And that's all for now.  Will hopefully text later to let you all know what is happening.  J x

Blogging From My Bed

Speech went really well last night.  Didn't mince my words and told the assembled doctors and nurses what I thought of them and also what they could do to put things right.  Got a few laughs, a round of applause and a personal thank you from the Chief Executibe of the MRI.  Phew. 

Had lunch today in Warrington which was cool and caught up on all the latest goss.  Ronda couldn't make it because she'd driven her car into something and Lisa was just too busy but otherwise everyone turned up.  Had nice food in The Cotton Mill - the one bright spot in Warrington (apart from the HMRC offices of course).  

Back down to Swamsea tomorrow as mother currently still in hospital.  There's a possibility she may come out tomorrow so fingers crossed.  I'll blog from Swansea and let you know.  That's all. J x

Back In Manchester

Mum doing better at the moment although she still has the drain in :-)

Saw Dr Yvonne yesterday. The good news is that the radiotherapy was effective in shrinking the tumours on my back.  The less good news is that a number of new spots have appeared in my lungs.  However, they are so small that it means I don't need to start treatment yet.  Which is good news.  Given the cancer I have it was inevitable that these spots would appear and I'm lucky that it's taken this long for them to do so.  Although this means that I miss out on the current new trial at The Christie, there is another one opening up soon which I'll qualify for when I start treatment (expected to be after Christmas with any luck). 

I'm feeling fine in myself and the only pain I have at the moment is the usual lower back pain which I've had for years and control easily with regular painkillers.  I'm putting my morphine on eBay to make a bit of money.... :-). That's all. J x

Yet More Hospital News

Mum doing much better this evening.  Blood pressure is in the normal range and she managed to eat some food and keep it down which is a good sign.  I spoke to one of the nurses today and they will now monitor her food intake (previously they'd just been noting her chart that they were giving her breakfast, lunch and supper and not noting the fact that she wasn't eating any of it).  God I hate nurses sometimes (a lot of the time). But not all of them. Some of the good nurses are my friends. Her SATS wee also up to 94% which is pretty much where mine are.

Anyway, back to Manchester tomorrow for scan results and trial discussions on Tuesday.  With the fabulous Dr Yvonne fresh back from Sydney.  No doubt the consultation will consist mainly of Dr Y and DD swapping Oz anecdotes (yawn). That's all.  J x

More Hospital News

So Mum hasn't had the best of days today.  Quite a lot of pain and quite a low blood pressure.  However, the drain of fluid from around her lungs sems to be helping with the pain and putting her on intravenous fluids seems to be helping her blood pressure.  Certainly she seemed in better spirits this evening than she did this afternoon.  She's still not eating very much though and still clearly isn't right.  It's very much a question of waiting to see how things develop.  On the positive side her ECG was fine.

Also on the positive side, City won 7-0 today :-). J x  

Hospital News

Went visiting tonight.  Ward Mum is on is old fashioned (this is Wales after all) but not too bad.  There are 4 beds in the room she is in.  She seems in quite good spirits but I think that is because her breathing is easier now following the draining of fluid from her lungs.  We still don't know where any of this leads yet and speculation is a little pointless at the moment.  She will, of course, be in all weekend (no one gets discharged at weekends) but hopefully she will see all the doctors she needs to on Monday and then some decisions can be made as to where we go from here.  She thanks you for all your good wishes. That's all. J x

In Swansea

Only just arrived so not seen my Mum yet.  Will update here later once I've seen her.  J x

Update

Mum has had to go into hospital for tests. Her breathing has been a little difficult for a couple of days and she has an acute pain in her side that won't go away.  I'm therefore going home to support her and my Dad. I'll leave in the morning because I have a CT scan this afternoon.  I'll be back on Monday because I have a clinic appointment on Tuesday to get the results of all my recent scans.  What happens after that depends pretty much on the results of everyone's tests.  I'll keep you updated though. Unfortunately it means I'll miss out on a lot of theatre stuff I'd booked but that can't be helped.  That's all. J x

How Long Have You Got?

This will be a big blog post to make up for the fact that I haven't blogged for a while.  First of all I just need to say that I feel fine.  In fact I feel better than I have in a long time.  No high temperatures, no significant breathing difficulties and very little pain.  So that's all good.  So what have I been up to? Well....

So Wicked wasn't as good as the West End.  Was never going to be but it was a pretty decent show nonetheless but I had to leave at the interval anyway.  It wasn't the show, it was the audience.  The woman next to me kept checking her mobile phone. I eventually told her to turn it off and then she spent the rest of the first act complaining about me to her companion.  There was a row of drunk, middle aged women sat behind us who didn't stop talking and the people in front of us had the noisiest bag of sweets I'd ever heard.  And then to top it all someone in one of the boxes was taking photographs using a flash during the performance.  Of course the management tackled them on this but that just added to the disruption.  I was so angry with it all that I just couldn't go back.  I've emailed the Palace Theatre to complain. Luckily Toby and Gill enjoyed the show and then joined me and Denise in Felicinis after the second act.

Saturday saw the three of us lazing about the flat in the morning (Gill and Toby in their onesies) watching Saturday Kitchen and then it was off out at lunchtime to meet the rest of the team: Richard, Mike, Daniel (with the lovely Sharon) and Liam. Had drinks in Kro Bar (Piccadilly) followed by lunch in Piccolinos. Thence to Alchemist (New York Street) and the bar at Doubletree by Hilton (formally City Inn) where we got into all sorts of arguments with the management about the contents of a "Rum Old Fashioned" cocktail (we eventually got them free).  No idea what time I got home.  Clearly I managed to cook myself some supper because the kitchen was a complete state when I woke up.  

Sunday was a recovery day and was joined by Ms Drury to watch the football. God we were terrible. That second goal by Chelsea was appalling.  Aguerro though remains a angel.  

Monday saw the official unveiling of the new kitchen chez Denise.  And very nice it is too.  I particularly 

Ike the back-lit glasses cabinet although it does mean that those glasses are going to have to be spotless and sparkling at all times.  Had some fizz and some nibbles but didn't go out for the subsequent Indian meal as had bad indigestion.  Have had it for a few days now and am hoping its to do with the antibiotics (which finished yesterday) and so will calm down.  I'll let you know.

Yesterday was lunch with the delightful Lesley and the delightful Jane Kendall (née Aspden) at San Carlo.  I had Fagggotini San Carlo. V nice filled pasta in a mushroom sauce followed by indigestion!

Last night saw me heading off to the Royal Northern College of Music (tout seul) for a concert by Michael Nyman. He was delayed coming on stage by 45 minutes (no explanation) which would normally annoy me so much that I wouldn't enjoy the show (I am turning into Victor Meldrew) but he completely won me over.  The show was sublime.  And I defy anyone to find a nicer piece of music than the theme to the Jane Campion movie, The Piano.

Today have been for a Macmillan meeting already and then I'm out to the cinema with Gill this evening to see Captain Phillips - the Tom Hanks movie about Somali pirates.  I'm not normally a Tom Hanks fan but the trailers look good and it's had some decent reviews.  I'll let you know.

And that's all for now.  Sorry for the long gap.  J x

Busy Day Yesterday

So it was off at crack of dawn for my MRI scan at The Christie. All went without a hitch.  Took about half an hour.  Then it was off to Buxton for drinks in The Palace Hotel (not very good), lunch at St Moritz (very nice) and then more drinks at Monk (fabulous, love this bar). And then the train back to Manchester. A good day.  Great to see Chris and Dave.

DD was very naughty and bought me a picture as a thank you for letting her stay whilst her kitchen was done.  Totally unnecessary as she is welcome to stay here whenever she likes for as long as she likes. Fab picture though, one I'd admired in Mr Thomas's a while ago (in their exhibition of local art students' final show works).  

New guests this evening - Toby and Gill - as we're off to see Wicked tonight.  Hope it's as good as the West End.... That's all. Need to get on with some cleaning.... J x

Feeling Good

No high temperature.  No neck pain (for two days now).  Back pain starting to ease.  It's all good at the moment.  Phew.  :-)

Had a busy day yesterday.  Met Lesley for coffee in town then it was off to meet two new volunteers for the Macmillan stuff I'm doing and to talk them through what they can expect.  Then took them to a meeting and gave them a debrief afterwards.  Following that I drove to Wythenshawe hospital to pick up some more antibiotics and saw the lovely nurse Lesley there (she enquired after my "mums"). Thence to Michele's to drop off some potatoes and then home.  Exhausted!  Luckily just have one trip to make today to B&Q with the kitchen queen (who is moving out today which is just as well as Toby & Gill are coming to stay on Friday when we're going to see Wicked).  Lesley didn't enjoy it but I'm dead excited. But knowing me I'll come out a afterwards vowing never to go and see touring West End productions again... :-)

Tomorrow is another busy day as I have an MRI scan in the morning and then me and DD are catching the train to Buxton to have lunch with the fabulous Chris & Dave. We've even got a voucher for a restaurant.  What were the chances?

Have started making plans to spend NYE in Cornwall with Michele at a spa hotel.  Sounds lovely.  All subject to health stuff of course.

Have also been sent links to the videos I made for Macmillan. I really like one of them and one of them is just OK. But I don't think I can put them up here as they're digitally protected/copyrighted or something.  If I can get permission I'll put them here.

That's all. J x

OK So I'm Fully Aware How Sad I Am....

.... but I love this and I want one!

http://youtu.be/xYsSiaBZmRk

Good Afternoon

Had a good nigth's sleep last night and feel well rested and comfortable today.  Still feel like I have a chest infection (I get out of breath easily) which worries me slightly as I would have expected the antibiotics to have had a greater effect by now.  But we'll wait and see when the seven days are up.

Back and neck pain is intermittent. I don't know what this means. I thought they were getting "better" but I'm not sure intermittent counts as "better" as opposed to the pain getting less.  We'll worry about that one after the MRI scan though.

In the meantime I continue to take things easy - a task I am well qualified to undertake. Watched the City match this morning which was very exciting (especially as we won) and various trash TV stuff I'd recorded once my live-in-carer-in-chief had departed.  

Went for a meal in Avalanche last night but it wasn't too good.  Although the company was excellent! 

Tonight it's a curry with some more excellent company and hopefully some great food and service. 

That's all. J x

We *Heart* Daniel Radcliffe

For many many reasons but also because he said this to The Sun:

Go Daniel :-) J x

Stoked

The Walking Dead series 4 starts tonight. Aaaaaaarghhhhhhh. #soexcited #loveandrewlincoln #dontreallylikezombies

Quick Update

For those who are worried.

I have been quite ill and in a lot of pain recently as well as feeling scarily breathless - hence no postings. In hindsight, Ibiza was a mistake and I should just have stayed at home.

It's been discovered that I have a chest infection which explains the feeling ill and breathlessness. I'm now on antibiotics for that so it will hopefully clear up soon.  Doctor Yvonne was slightly worried about the possibility of a pulmonary embolism but I was scanned for that today and I don't have any of those.

The pain in my back and neck continues to be troublesome - I had a dreadful night last night and was sick this morning - but I've been given some morphine which will allow me to finesse my painkillers a bit more cleverly to help hopefully.  Today has been, on the whole, relatively pain free. I will need an MRI scan of my spine to see if these pains are cancer-related or not. That is likely to happen next week.  I suspect the pains are not cancer related but let's see what the scan shows.

And that's about the long and the short of it so far.  Was at Wythenshawe hospital just after we landed on Tuesday, at The Christie all morning today and am at The Christie and Wythenshawe hospital tomorrow! Will resume normal service again soon I promise. And thanks for all your good wishes. J x

So Have Spoken To Nurse Jackie

And she's happy to support my decision to go full term in Ibiza. Which is a relief. Have had an OK day today on the whole. 

Ladies are back from Ibiza town and lunch and are now lounging on the sun loungers. 

And that's all so far. J x