Thursday, 24 February 2011

The Red Chair of Contemplation and Thelma and Louise

It was Janine’s birthday on Saturday and one of the gifts she received was a red Ikea chair.

Some of you will know that just prior to the election last May we acquired a ‘hat of reasonableness’.  Discussions at the dinner table had become somewhat passionate and occasionally heated (apparently provoked by me – which I find hard to believe) and I decided we needed something that would bring order from the chaos.  We adopted the rule that you were only allowed to speak whilst wearing the hat.  Ellie still voted Lib Dem but then I am sure we are all guilty of youthful indiscretion.   

Anyway, we have decided that the chair is to become ‘the red chair of contemplation’.  It is ideally positioned for just sitting and thinking, for reading the paper or for chatting reflectively whilst the tea, coffee or dinner is made.  Perhaps one day you will get to enjoy it.   That would be nice.  And I won’t make you wear the hat. 

This year’s was probably not the best birthday Janine has ever had.  There have been a lot of tears over the last week and Saturday morning was no exception.  With such a positive prognosis before Christmas, the harshness of the treatment has been not just emotionally traumatic in itself but a brutal reminder of the previous cancer and all that entailed.  To use a friend’s analogy, it is as if she has been picked up at the top of the stairs and thrown to the bottom again. 

You know how strong Janine is yet even she has been on the edge of saying she can’t take the third cycle.  It was a relief to her to find out today that she won’t now have that cycle next week as originally planned but that it will be postponed a week and she will have more time to recover.  This next cycle will be the seventh round of high dose chemotherapy she has had in her life – with another two rounds having being cancelled because her heart and kidneys were not up to it.  I’m not sure I’d want it either and would also have been reaching for the tissues.  

Saturday did get better as friends dropped round and we also headed to sit by the river at Runnymede.  A grey sky may have merged through a grey tree line into grey murky waters but there is something about sitting there at the bend in the river which restores and revives – even if you are drinking luke warm tea from styrofoam cups.

The plan had been to spend Saturday in Bristol adding another Carluccio’s to the ‘Carluccio’s we have been to on Janine’s birthday’ list, then catching up with The Student and watching her in the chorus of her first opera.  In the end, more friends turned up when we got back from the river with a cake 

and we spent Saturday evening with a home cooked Anglo Indian Sausage Curry (very nice) and Toy Story 3.  I am growing a little concerned that my wife is developing an inappropriate relationship with Buzz Lightyear, particularly in his Spanish form.

This week has also been half term week down here.  Monday was spent mostly at Royal Berks as Janine needed her PICC line unblocked and flushed.  Thank you Hilary for taking her and waiting with her.  Jon should buy you a Kindle for these occasions.  I’ll put a word in for you.  That trip also gave Janine the chance to see the treatment facilities at the Royal Berks and she was impressed.  I somehow managed to add to the list of things you should not say to a cancer patient by remarking that this was really good to know ‘for next time’.  Doh.

Another friend turned up with cup cakes.  I didn't get a picture but I believe you might be able to see a sample on her blog :-)  We did then manage Carluccios in Reading yesterday for a belated birthday breakfast. 

This is turning into one of those Christmas family 'what we did this year' letters.

Anyway, today we saw spirits lifted completely as, with my deep thanks to Janine’s former school choir buddie and long term friend Amanda, Janine made it to Hayling Island for a much longed for bag of chips on the beach and a visit to the wonderful David and Evelyne.  As I contemplate this road trip, I have Thelma and Louise in my mind.  Not the ending obviously but the potential trail of destruction left in their wake.  Go girls ……. 

In one of many drafts of this post I mused at this point on Psalm 23 and valleys and shadows of death.   I’ll leave it instead with asking simply that, if you are praying for us, please pray that Janine knows the peace and comfort and presence of God in this particular period of darkness that she has spoken about before and that she dearly wants again.

Monday, 14 February 2011

The Practicality of Vows

Thanks to the patient, herculean efforts of our latest hero Sean (one of the haematology nurses on ward T16)  Janine made a rapid recovery yesterday morning and was able to come home late last night.. 

The nausea still lingers in the background but she is not being sick.  She is very tired and that is going be the pattern of the next few days.  She will hit neutropenia sometime around Thursday so we will be back to keeping her locked away for the weekend and the body scanner will be reintroduced for visitors. 

I don’t remember the exact context now but a few months ago, as we were discussing who out of the kids and I should help Janine with something, Ellie, as only she can, reminded me that, whilst they owe Janine the duties of a child to a parent, I on the other hand have taken vows.

As any lawyer will tell you there is a world of difference between a mere contractual obligation or undertaking and a covenant of which the marriage vows would be an example.  As we know from the Liberal Democrats, a ‘pledge’ is something entirely different.  In fact, if you find yourself married to a Liberal Democrat you might want to check that they ‘vowed’ and didn’t just pledge.  If you are a student whose father or mother is a Liberal Democrat and who has pledged to support you through Higher Education then  …. Well I’m just sorry for you.

But to get back to the point, whatever their nature and as Ellie reminded me, what has long struck me about the vows I took is their sheer practicality.

I am as much a sucker for romance as the next person.  I would confidently list chick flick rom coms amongst my favourite films (Sleepless in Seattle, You’ve got Mail, How to Lose a Guy in 10 Days (I have some ideas on that by the way) Munich, Saving Private Ryan, Blood Diamond) but amidst all the apparent romance and excitement of a wedding day we make some pretty fundamental and realistic promises. 

We promise to forsake others because whoever wrote our vows knew that there will be others to forsake.  We promise to love whether our lives are better or worse because they will be both at some point.  We promise to keep loving in sickness and in health because the illness of a partner can stretch and test and strain us beyond anything that mere feelings will sustain.  I know that there are some who find themselves in relationships that are abusive or in situations that are unbearable and irretrievable but I wonder whether for the majority of us the best preparation for marriage might not be simply to think hard on those vows and what we will promise.

Tony Blair has said that politicians campaign in poetry and govern in prose.  It is a dreadful analogy but our relationships and marriages seem to me to be the same.  We may take vows in magnificent and beautiful sonnets but our love is proved in the mundane essays of our lives together. 


Sunday, 13 February 2011

Saturday Night Fever

Well thankfully not but Saturday Night Slightly Raised Temperature and Vomiting doesn’t really work, would never have made it as an iconic film and certainly doesn’t scan well to that unique Bee Gees disco sound.

Vomiting and a slightly raised temperature is however where Janine is at on this Saturday night.  She wasn’t feeling well enough to come home on Friday and hasn’t really recovered from there.  For some reason, the anti sickness drug that worked miraculously two weeks ago isn’t working this time and it is trial and error with different drugs to see what will work.  She hasn’t been eating though she was starting to give that a go when I left the hospital this evening.  She’s not sure she is going to be ready to come home tomorrow either unless she really turns a corner in the morning.  If we get to Monday, she will have been in hospital for a week which was not what we were hoping for.  Still, it is better to get the sickness under control there than to try at home.  She is feeling pretty low emotionally as well, as I am sure you can imagine.  

With Ellie away in Bristol, home is, of course, a male dominated environment at the moment.  For those of you concerned about that and what Janine might find when she returns, I can put your minds at rest, not least because my wonderful, wonderful parents and sister were round on Thursday to make sure everything is clean but also because I like to think that recent experience has given me standards that I am not about to let slip.  I said to Janine this evening that I don’t feel as though I am spinning plates so much as juggling a whole number of balls.  My fear is that I have thrown one so high that I have forgotten it is up there and it is about to land next to me with a dull but embarrassing thud.

Ben and Sam are my heroes of the hour simply for getting on with life over these last few days and not creating any fuss or difficulty or any extra demands.  Today has been a full on Saturday in which we have managed to get Ben to football first thing (well 10 minutes into the warm up), discuss his A level predictions and uni preferences, fix kitchen cupboards, change light bulbs, rearrange some of the shed, test the fire alarm (I hate those adverts on the radio they are not good for people like me), enjoy espresso based hot beverages and bacon and egg sandwiches (Italian spiced meatballs and spaghetti in Ben’s case – thanks Mrs. Mehta), wrap a birthday present, get Sam to rehearsals for Our House, fill the car up, send a couple of emails, speak to Ellie, give an hour to political knock down ginger (you knock at the door and it’s the occupants who run away), spend the afternoon with your girlfriend and head for the cinema (its OK that was Ben not me), drive up to the hospital to see Janine (that was me), come home, burn (I know I know  … how ?!) another pizza but make up for it by making a salad, half watch a programme on Shania Twain’s life story (man I think I’m a woman  …. ), scan the Guardian, collect Sam from a party, load the dishwasher, make a mental note to do the washing in the morning and head to bed to type this.

I hope you have been able to make the most of your Saturday as well.  I’ll let you know when Janine comes home. 

Wednesday, 9 February 2011

Lessons Learned

I learnt two things this evening.   

Sainsburys won’t deliver to under 18s.

My difficult and complicated relationship with the drawers in our freezer has finally broken down, possibly irretrievably.

Fortunately, I was only 5 minutes from home when I learnt the first lesson.  As for the second, the emotions are still too raw for me to share too much.  I will work towards reconciliation at the weekend.

There is not much to tell you otherwise so I thought I would include a couple more photos for your general entertainment and, I hope, delight.  Janine is particularly proud of the pictures of the sun rising over St. Paul’s and the City.  She has had a good day, is not feeling too unwell and should be finished by Friday morning so that we can get her home for the weekend.

There is one development which I almost don’t want to tell you, partly because I can’t find the right analogy.  I feel as though I keep writing confidently that the treatment regime is so many cycles and then scans, only to come back almost immediately to say it has changed.  The development is that we might not be looking at just three cycles of treatment.   

Janine saw the head of the haematology team yesterday morning and, when she asked whether the three cycles would be it, he said he isn’t sure and he wants to see at the end what else might need to be done.  That means that we might be looking at a longer period of treatment than we had thought, which wouldn’t be great.  On the other hand we might not.  It’s a question of patience and waiting and, as I was reminded again last night, taking a day at a time.  

I am learning gradually what that means and the release it can bring but it does not come naturally to me.  I have what I fear is an overdeveloped longing for the certainty none of us can actually ever have.  I can imagine some of you nodding slowly as you read this, either in recognition of the same trait in yourselves or because it doesn't take too much to analyse the personality traits at work here.  Jesus really was right though.  Don't worry about tomorrow, there is enough to be concerned about in today.  And as Forrest Gump might say, that's all I have to say about that.

Now, the photos:


Monday, 7 February 2011

'I love the smell of chemo in the morning'

A quote some of you will recognise from Jack Nicholson in ‘The Bucket List’ and which, if I’m right, is itself adapted from another film.  'Good Morning Vietnam' ?  No doubt the film buffs amongst you will let me know. 

Anyway (and please, please don’t read anything into this) we watched The Bucket List on Saturday evening.  I wasn’t entirely convinced we should but Janine had seen it before and thought I should see it and, frankly, it’s brilliant.  Ultimately uplifting despite the grim subject matter.  I won’t spoil it for you by telling you the plot.  Just go borrow or rent (or download to your ipad or whatever you do).

Watching the film did make me think that there must be a study out there somewhere on the portrayal of cancer in film.  I wonder if you could track changing attitudes and responses ?  There must be a risk that we either romanticise or that we assume a standard reaction or response, which in turn feeds our expectations as to how we should react if we experience the disease.  In furtherance of my study, I watched The C Word this evening, a new drama on Channel 4 which has been billed as potentially ground breaking (and controversial) in being a comedy about living with a cancer diagnosis.  There were funny moments but ultimately it left me feeling unmoved either way.  It wasn’t that funny, not just because it is portraying experiences that can actually be devastating emotionally but because, well it just wasn’t that good.  If you have seen it, let me know what you think.  

Moving swiftly on to the real reason for this entry, Janine is back on Floor 16 of UCLH as a bed came up this morning.  The chemotherapy will start tomorrow.  It’s a shorter cycle this time as one of the drugs is missed out so we are hoping Janine can come home on Thursday.  The team seem pleased with her response to the first cycle which is why they are not now planning to scan or test anything until after the third cycle.  In herself, Janine was relieved to get on with the treatment but it has definitely been one of those days when she just wants this all to be over and done. 

There was one funny moment when I thought we had found ourselves in a ‘things you wouldn’t normally hear on a cancer ward’ round on Mock the Week.  A nurse came to weigh Janine whilst she was eating chocolate.  ‘Oh no’ she says, don’t weigh me whilst I’m eating this’.  ‘Ach’ says the nurse, ‘life’s too short to worry about your weight’ ……. I’m not sure either of them saw the irony.

The view from the room this time is East.  It also appears to be the deluxe suite with a sofa bed and a proper armchair, though no fridge.  I’d offer the sofa bed as a cheap crash pad after a night out in London but the food isn’t that good and there is no complimentary tea and coffee or newspaper.  Plus you wouldn’t like the stuff they give you through the drip.

Which brings me neatly back to the Bucket List.  ‘What’s chemo like ?’ asks Jack Nicholson.  ‘Well’ says Morgan Freeman, ‘if you can take the vomiting and your veins turning black and your bones feeling like napalm, it’s a day at the beach’.  I didn’t dare comment.  


Friday, 4 February 2011

Its all about the beds

Well instead of sitting in bed on the 16th floor of UCLH watching her Miranda DVD Box Set, Janine is home with Sam and I watching the rugby and eating root vegetable crisps accompanied by a small Guinness.  I'm sure it's in the treatment plan somewhere.

As you can guess there were no spare beds again today.  This was not great news for a frustrated Janine but it also means that there are people needing emergency treatment which isn’t good for them either. 

So it’s a case of settle down, enjoy the weekend and pack the bags again on Monday.

Have a great weekend.

Subscriptions, Waiting, Anbetung and Erweckung and Fixture Clashes

Some of you have been asking about subscribing to the blog by email. 

Well on this dark and windy morning whilst we wait for another phone call, I have finally navigated my way through blog and internet speak (and we lawyers are supposed to be bad – I ask you) and if you want to receive email updates then have a look to the left and you should see a subscribe by email link. 

It’s likely that the activation email will end up in your Spam inbox so have a look for it there if it doesn’t arrive in your inbox.

Janine has gone all retro this morning and is lying on the sofa listening to a German Worship CD.  In a moment we are going to try and sneak in a coffee with some friends then hopefully it’s the call.  Otherwise, I’d better to do some work this afternoon – and establish just how I am going to watch Wales v England with Sam and the Might Royals v QPR all at the same time.  Why does that happen ? 

Thursday, 3 February 2011

Seconds Out ....

But not quite round two.

A day of waiting for a call from the hospital to say we were on and then no beds and no idea if the blood test was OK anyway.  Same again tomorrow and if there are still no beds then I guess it will be Monday before Janine goes in.  Thanks this time to the fantastic Simon Benham for being ready for most of the day to take us up to London.  

And personally, this is my favourite wig of the two Janine has.  That IS Grumpy you can see in the background.  A present to me that I thought was ill judged but which the rest of the family thought highly appropriate.