On Off On Off

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

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

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

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

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

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

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

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

That's all. J x

All Good

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

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

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

What else has happened?  

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

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

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

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

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

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

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

Damien Hirst

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

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

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

Fatigué

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

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

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

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

Good News

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

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

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

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

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

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

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

That's all. J x

Day One Home

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

Home

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

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

Waiting

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

Seen It All!

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

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

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

What A Nice Young Man

So had a lovely chat with Alex this morning. He was the Medical Uni student assigned to me (they were everywhere on the ward today so not just me being singled out). He listened more than he talked which is, of course, what every good health care provider should do. So I told him my story. Pretty much all of it so, as you can imagine, he's a very good listener indeed!

Also gave him blog address so he'll be checking back later to make sure I've been nice about him. He also asked permission to circulate it round other medical students which I said I'd be happy for him to do so either I'll be swamped, or trolled or they'll show the same level of apathy around commenting that the rest of you do! 

Sean and Debbie also came up to see me. Honestly if I could sweep those two up in my arms along with Dr Yvonne. And Nurse Jackie and Sister Leslie over at Wythenshawe of course and hug them and squeeze them all at the same time I would. 

Steroids still seem to be working (hence above bounciness and relative pain- freeness). More later (didn't really have anything to say but I didn't want Alex to visit the site and go away disappointed that he hadn't been mentioned :-)

Oh, and finally, the last thing any health care provider should say when they leave a patient is: "Is there anything else I can help you with?" Because until they've done that, they haven't finished their job. J x

Twitter

"A sandbag?" - Lady in Bracknell.

What Is It About Me?

The ward has already lined me up to give a talk to medical students later on today... J x

No Bowels Today

At least none that I need to talk about. All functioning well now and I had about 6 hours sleep last night which is good for a hospital. I also have to say that I continue to be impressed by the standard of nursing at The Christie and not just from individuals but across the piece, top to bottom. And those that have been with me a while will know that I'm not a fan of nurses and the various others who work in the wards generally. So there. I've said it. Slap me in the face with it later when I change my mind.... :-) J x

People Come And Go Round Here So Quickly

Saw Physio mere moments after my last post and she says she's happy for me to dance down the corridors if I want to so that'll be good news for the night staff I'm sure! 

Also, just seen Dr Yvonne and she thinks she'll be in a position to organise my discharge on Friday. More good news :-)

Had quite a long chat with Dr Y. Her views are that she can't guarantee me any outcomes from the current radiotherapy treatment neither a pain-free period nor a lower limb paralysis free period. Obviously I'm more concerned about the latter. However, she will say that it appears that my tumours are "radio-sensitive" (hence their response to treatment last time) and she hopes this continues. They're not completely radio-sensitive though otherwise they wouldn't be back at all.  This response makes me somewhat happy. 

On the pain front however I am much less concerned as I feel more in control of my pain and it seems, at least according to the Christie Palliative Care Team, that there is no upper limit to the amount of pain relief I can have. This means morphine folks. Maximum Morphine. Love the idea of that: Maximum Morphine. I bet there's a snow boarder out there with that name. But as I have NO TELLY I can't watch the Winter Olympics to let you know. Actually there's a big telly in a room at the end of the really long Florence I'm on so may pop down later and have a look. 

On the Drug Trial front, Dr Y has emailed the Trial sponsors (in America) with details of my radiotherapy and proposed new dates for the randomisation (03/03) and treatment start date (05/03). Hopefully they're all laid back Californian surfers (with names like Maximum Morphine) and will just say "that's good shit man - although given last night's shenanigans, maybe not - and just let us get on with it. Potentially though they could also pull the plug as we've now introduced more random elements to the programme. 

We may well also have to consider the surgical option further down the line so we're not burning bridges with Salford just yet although we're a little annoyed with them over their actions on Saturday night (we stress that there are other people in Salford and they shouldn't all be tarred with the surgeon's brush...). But we Mancunians have wanted those Salford Bridges pulled down for a long time. Coming over here and stealing our TV studios.... 

I will also be getting in touch with St Anne's Hospice soon too so I can see what services (including complementary therapies for my carer) that they offer. 

In other news, I'm feeling calmer and more relaxed about things. Hope you are too :-) J x

So It's Morning (Just) As I Write This...

... and feeling better despite terrible night which I'll spare you the details of because any tale would involve a lot of use of the word "bowels".

Had radiotherapy this morning and it went without a hitch. Also long visit from Palliative Care Team. Seeing Yvonne this afternoon hopefully. 

As it happens the ward I'm on is referred to as a "Nightingale Ward" so I wasn't far out with my description. There are two if them at The Christie and they are used as decant wards for occasions like (now) refurb work to a ward or a "deep clean" of a ward. 

Still awaiting visit from physio and OT. Better get here soon as I need to be OK'd to get out of bed and get to a toilet when I want because I don't want another "bowels" situation. 

Spoke to Dad this morning and he's understandably worried but not a lot I can do about that at the moment. Hopefully I'll be more mobile and able to get around when he comes up. I will need to be treated as an inpatient for at least 5 radiotherapy sessions (Monday will be last of these unless they treat me Saturday - happens sometimes). Otherwise 10 radiotherapy sessions as an inpatient. My preference obviously for a 5/5 split. 

And that's all for now. Will blog later. J x

Further Running Not Literal Update

Salford can't even be bothered to see me. No idea why. So treatment option is radiotherapy and we started that this afternoon. It's not ideal and a bit dangerous re damage to bones at the radiotherapy site that's been done before but since the alternative is lower limb paralysis we need to live dangerously. 

Have been moved off the (beautiful) assessment unit onto Ward 3 which just looks like something out of the Crimea. It's terrible. I'm not sure I'll last here. Need to speak to Yvonne tomorrow. She's coming up to see me about 1500. 

There are also no telly facilities on Ward 3 and I just splashed out on 7 days' worth once I knew I was going to be an inpatient for 10 days or so... Annoying. 

Not happy. But then I didn't sleep well last night so I may be over sensitive. Let's see how I feel in the morning. J x

Update On The Run (not literally)

Have been admitted to The Christie following my scan yesterday. They are worried about a new tumour compressing my spine. Have had to lie still on my back all night on a special bed and will, today I think, be transferred to Salford Royal for them to look at me. No other info at the moment. Will update when I can. Stay strong. J x

Update

So things are moving pretty rapidly now (and not just because I'm driving a Jaguar - although that helps). 

Had a lovely time in Sheffield with Jane & Bill. Always good company and they helped me work out some of the controls on the Jag so I now know how to set the cruise control and the speed limiter. Thank you guys :-)  And the Nest shop in Sheffiled just does the best furniture - we were all agreed on that.  Lunch was a little less successful simply because my pain situation meant that I couldn't really eat and didn't have an appetite.

However, it was when I returned to Manchester that things started to hot up. How long have you got?

Firstly, having parked the Jag, when I got out of it and tried to walk across the garage towards the lifts, my legs gave way beneath me and I just fell to the floor (luckily not injuring myself in any way). But it just happened out of the blue.  I couldn't explain it. So I picked myself up and continued my journey and then it happened again, just outside the lift. Again no other injuries but I was beginning to think that it was going to take me a long time to get through the flat door!  In actual fact, it hasn't happened again thank goodness.

So I was straight onto the NHS Out of Hours service (why do these things always happen at weekends?) as well as an email to my oncologist just to be on the safe side.  And I have to say this is one of those occasions when the NHS came up trumps.  The out of hours people advised me to speak to their GP who would (and did) phone me back within 20 minutes. The GP said I probably needed an assessment at an A&E and advised me to get to either MRI or Wythenshawe (since I was already receiving treatment there). She said she'd ring an ambulance for me but I said I was happy to get a taxi.

In the meantime my oncologist had phoned me (she is so good Yvonne) and said that she was trying to get me a bed at The Christie so that I could be assessed there.  She said the on call medical oncologist at The Christie would phone me. Which is exactly what happened. She said that she thought I needed a scan to assess whether the tumour on my back was causing "spinal cord compression" which is what had led to the weakness in my legs.  Unfortunately The Christie didn't have the facilities, out of hours, to carry out the scan and therefore I should attend one of the Manchester A&Es. We agreed eventually that I should attend the A&E at Salford Royal hospital since they were the hospital already being consulted over whether or not to carry out surgery on my back.

So I went to Salford Royal and they did all sorts of tests to assess whether I had feeling throughout my lower limbs, which I did, and my back passage, which - oooh Matron - I did.  They therefore didn't want to carry out a scan since there were no indicators that I needed one urgently. So they discharged me eventually with a prescription for some steroids to relieve swelling.  Unfortunately as soon as I arrived home I began a night of vomiting which lasted from 2300 until 0900 the following morning.  Since I hadn't eaten anything there was nothing to bring up but my body insisted on going through the motions anyway. Meanwhile of course my Dad, in Swansea, DD, in Brompton Lakes and Mrs T in Coldstream were all frantically trying to get information out of me as to the current state of play.  Well I had no signal in A&E and, once I'd started throwing up, very little opportunity to text or phone.  I was exhausted in the morning and just about managed to get out a round robin text to them all that I wasn't dead but was trying to get some sleep.  DD was cutting short her break (that woman is such a star but I hate doing this to her) to come and look after me.  Which is what happened.

I got steadily better and stronger on Sunday and managed to keep down a few Ensure Pluses and today I feel almost back to normal although still a little weak.  Have exchanged a few emails and phone calls with different medical personnel today and the current position is as follows -

* First port of call is the surgeons.  Do they want to (or feel they are able to) operate? If the answer to that question is "yes" then we go ahead with the operation.  This may put my place on the trial in jeopardy (they aren't going to 'randomise' me today for instance) but the redoubtable Yvonne will talk to the trial sponsor to see if they are willing to keep my place open.

* if the surgeons say "no" then it's full speed ahead with the trial, they'll 'randomise' me tomorrow and I'll start whichever of the treatments the randomiser decrees I'm to receive on Wednesday.

* In the meantime I shouldn't take the steroids (had I mentioned those yet? Whole different story, don't worry) unless I have another "episode" of leg weakness. 

So you're now all as up to date as I am.  I had intended on boycotting watching the Winter Olympics on account of the gay thing but given that I'm likely to be stuck at home for some time now I may just go ahead and watch it anyway. And we've won a medal. And the Russian's ice dance was just so beautiful even if they didn't score more than the Canadians (anyone got any idea what happened in Vancouver by the way - they're all talking about it without saying exactly what happened. Maybe what happens in Vancouver stays there?). So if there's a Gay God up there I hope he'll forgive me....

That's all. J x

Oh Twitter :-)

It's Adam and Eve, not Vladimir and Dmitri. #sochi2014

In other news, pain now seems to be under control. Having a good day today. Lunch at Bents with the delectable Jim who, it turns out, is not a speed junkie after all #pedaltotheJaguarcarpet  Who knew? Sorry for scaring you honey. 

Yesterday spent interviewing Macmillan job applicants. Is there no one with vision out there? It was fun though and they were all really nice people and we appointed someone. 

Dad seems to be doing OK at the moment too. Which reminds me, I need to start clearing up the spare room for his arrival next Saturday. Sunday is his birthday too so all cards c/o me. Especially the ones with money in. 

And talking of money, phoned Beneden this afternoon to cancel my membership (over 20 years) as they do nothing for people with cancer.... ....only to discover they do! Give money that is. To people with cancer. I can claim for mileage and parking to hospitals, heating bills, even holidays *flicks through Virgin Atlantic catalogue*. Fan-Bloody-Tastic. I think I'm probably even allowed to take a carer along too. Those beaches in Bermuda, sorry, recuperation clinics somewhere warm, never looked nicer....

That's all for now. Sheffield for lunch and shopping tomorrow. J x

Quick Update

Had some real pain problems today. Not sure I've felt pain like that before (except maybe post-surgery). But it's all settled down a bit now thankfully. And the trial is still on course. Spent most of the morning at The Christie. They can't do the "randomising" for the trial more than 72 hours before treatment is due to start so I'll find out Monday whether I'm on chemo or wonder drug. Frankly after this morning I don't care which it is as long as treatment occurs.........  That's all. J x

A Jolly Weekend

So it was off to Nottingham on Saturday night in the Jag accompanied by my good friend Denise.  We stayed with Chris & Dave who have a beautiful house in the suburbs (actually in "Arnold" which seems an odd name for a suburb). We spent Saturday night getting rather drunk and I'm afraid, dear readers, that I retired rather early, unable to stand the pace, and left them to it (until about 0300 in the morning apparently). Sunday morning was rather a subdued affIair therefore - only livened up by my throwing up in the toilet!  But we had a lovely lunch at Harts and then I drove home and DD and I parted company and went our separate ways. 

Today is all about Macmillan paperwork (just as soon as I've had my shower) and then tea with Lesley in town this evening which will also be lovely. I shall be consuming a meal involving lobster I've decided.  Because I've never eaten lobster so far and I feel like I should.

I'm sad to report that the increased dosages of pain relief do not appear to be working particularly well but I'll discuss this with the doctors (should I see a doctor) on Wednesday.  That's all. J x