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