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