26th March 1988

Janine has made a remarkable recovery from the last cycle of chemotherapy and there has been an unnerving normality to parts of the last week.  I feel as though we are in a holding bay.  It could just be that that the treatment is over and that we can start to adjust to living in the aftermath of a second cancer.  We will find out on the 7^th April when we will get the results of the scans Janine will have on the 6^th. It could also just be that Janine is cured, but that we will never actually know, of course, save with hindsight as each day, month and year passes without a return.  I do have a theory that Janine will outlive us all and be standing at our funerals disappointed that we simply couldn’t keep up.

The hospital forgot to arrange a blood test for Friday so we don’t even know if Janine is neutropenic this weekend.  We are assuming she is but, although she is in bed asleep at the moment, she is far less tired than we had thought she would be and generally less ‘unwell’.  These are good days and days to be thankful for.

Yesterday was our wedding anniversary.  I won’t use that fact to write again about vows and promises.  Nor will I bore you with my memories though I will remark that Shine Jesus Shine and Laura Ashley wedding dresses (in fact Laura Ashley anything) were new and cutting edge at the time.  For those of you sniggering a little at the thought of this, remember Shine Jesus Shine still has the now often neglected quality of lyrics that followed a theme and a consecutive thought pattern.  And Kath Kidston.  Honestly love, you really are so late 80s.

Instead of all that, it is time that I seek to make amends for one of the greatest errors a groom has ever made.  And I don’t mean booking your wedding day for the day before British summertime begins (think that one through).  No, shocking as it may seem to you now (and as it may have seemed at the time to those who were there), I did not at any point in the day’s proceedings or during my speech ever say how beautiful my new wife was and looked.  I could claim in my defence that neither did my Best Man or my Father in Law but I realise how inadequate that is as an excuse.  I wince inwardly even now as I write it.

As you can imagine, this is not something that Janine has ever raised with me or brought to the attention of others over the years ……..  ……. love, of course, keeps no record of wrongs.  

But it was and remains unforgiveable.  Janine, you were beautiful that day and you are beautiful now.  You have loved me, encouraged me, supported me, looked out for me, forgiven me, followed me, inspired me, sacrificed for me, given of yourself to me and, yes, admonished me, rebuked me and on many occasions been exasperated with me.  God gave you to me and I know that I would not be who or where I am now without you.  You and the Blues Brothers were right all along.  It was a mission from God. Unfortunately for you, you are only 23 years in.   

           

A blog in two parts

A hope I can stand.

I am not going to be alone in this but I love this time of year. 

Today is officially the first day of Spring and, here at least, the weather has not disappointed.  There is a measurable warmth in the sun coming through the window and a brightness and clarity to the light that is full of promise.  And I think it is the promise I like most.  Analyse this if you will but I love the first buds on trees and bushes, crocuses as they break out of the ground, early daffodils and the shape and colour of closed tulips.  Somehow I don’t notice so much the fulfilment of summer.    

I could fill this entry with clichés on Spring and new life and the end of death and darkness (you may think I have already started) but I shall restrict myself to the theme of hope.

Not that I can hope (did you see what I did there) to cover that theme adequately here, nor am I anywhere near qualified enough to give you a thoroughly considered theological or philosophical treatise. 

It’s just that I have been thinking about hope a lot recently and need an outlet.  I’ve thought about its definition, its nature, its relationship to faith, the contexts in which we talk of it, the need for hope during periods of difficulty and, amongst other things, why, if its deferral makes the heart sick, God so often seems willing to allow hope’s fulfilment to be deferred for such long periods of time and sometimes even permanently. 

Hope has also been on my mind because, at times, I have struggled with what seems to be good news and with thoughts and comments designed to encourage me and to give me hope.   I’d love to tell you that I was helped to think through this by the weighty words of a spiritual giant.  Rather, I was pointed by a counsellor to a line from John Cleese in Clockwise:

‘It’s not the despair Laura, I can take the despair.  It’s the hope I can’t stand’.

My confusion has been with the nature of the hope that I have.  I hope that Janine has finished her treatment, that she is cured and that she will never experience cancer again.  At the same time, I defend myself against the disappointment that this hope might be prove to be false.  Hope can be audacious, as Barak Obama reminded us.  It can dare to believe that something better can be achieved or reached.  Where it is certain, it becomes faith and the things hoped for will certainly happen.  But hope must always be rooted in reality and more important than what my hope is, is where my hope is placed. 

And for me, my hope is in God.  Not a hope that God will fulfil all my desires and dreams or make my life easy and care free.  Not even a hope that God will heal Janine and let her live to old age.  He has promised none of those things.  Instead my hope is in God’s character, a certain hope that he is love, that he is good and that he is just.  A hope that his perspective is eternity not time, that his ways are not my ways, his thoughts not my thoughts, and that whatever he allows to happen he works for the ultimate good of those who love him.  

And that is a hope I can stand.

The stuff you really want to know

Many of you will have seen from Facebook that the third cycle of chemo is over and Janine was able to come out of hospital on Friday.  This was definitely the best of the three cycles in that respect and we have a lot to be grateful for.  She has been making a good recovery over the weekend after a long journey home in rush hour traffic.  Thanks to sister Rachel and my Dad for mounting the rescue mission on Friday afternoon so that I could go and see Ellie perform in Bristol.  More on that perhaps in another blog.  All I will say for now is that to illustrate where my daughter is at, she managed to leave us standing on a street corner in Bristol not just halfway through a conversation but halfway through a sentence.

Today we managed an impromptu picnic beside the lake in South Hill Park coming home only when the noise of construction traffic eventually became too intrusive.  Quite what we looked like in camping chairs with our fancy rolls, pears and pecorino cheese I can’t imagine but this is not a time for pride or vanity.  Janine then managed to cook steak for dinner and make her own potato wedges before collpasing on the sofa and concluding that had probably been a step too far.

The rest of this week is about the return to neutropenia and then we wait for the scan.  The date for that is the 6^th April but we are not sure when we will get the results.  Perhaps the week after.  At that point we will know where we are and what the next few months will hold.

Thanks for sticking with a long entry even if you have resorted to scanning, which I could understand.  Thank you also for all the prayers and support which are still coming our way.  

   

    

      

The Wilkinson Effect

I wrote most of this sitting in Room 5,  Haematology Unit, T13 North, UCLH which tells you immediately that Janine is back in hospital and the third cycle is underway.  A bed became available yesterday afternoon (Monday) and we travelled up yesterday evening which was all very convenient and more like checking into a hotel for a few days rather than an admission to hospital.  If only …….

The astute amongst you will have realised that T13 is not T16 and that Janine is on a different ward from before.  That was the cause of some initial nervousness on her part but the room is very nice, the nursing team are great and the TV seems to be working without any money being required.  

I haven’t mentioned this before but some of you will be able to appreciate my distress when, on entering the rooms Janine has had previously, we have been greeted by a message on the TV from Andrew Lansley the Health Secretary.  We haven’t listened to the message but I wonder if he was explaining how one man’s ‘there will be no top down fundamental restructuring of the NHS’ is another man’s, well, complete top down fundamental restructuring of the NHS.

Moving swiftly back to Janine’s room, the views this time are across North London.  It started as a beautiful early Spring day in Bracknell.  Up in London, a fog became a haze but you could just see Regent’s Park and then Hampstead Heath in the distance.  Parliament Hill Fields must have been there somewhere.  For me, and maybe you, that evokes painful memories of some of the most punishing cross country courses devised by man.  In my memory they both started and finished uphill.  And they seemd to go on forever.  There must be an analogy there somewhere

There turns out to have been distinct advantages in being forced to wait for this third cycle.  Janine is in a much better position physically and emotionally than she would have been this time last week.  She still doesn’t want this cycle, afraid that she will again come out of it feeling very ill and sick, but she is better prepared for it, knowing that it is an important consolidation of what has gone before.  She will be scanned after this, probably in early April and then we will see what is needed.  Current thinking is radiotherapy but we shall see. 

One thing that really helped over the weekend was a song writing day with the church women’s writing group on Saturday.  There are rumours of a new song from Janine and our much loved friend and folk troubadour Rosie Donnan.  Watch this space.  I have high hopes. 

What also helped was being able to sit down on Sunday afternoon to watch England v Scotland.  Having been to church in the morning and with Janine cooking lunch and with friends round, the day felt dangerously close to normal.   

Which brings me finally to the title of this entry.  I won’t tell you who was with us but watching the game I was able to witness first hand what I have imagined for a long time to be a national phenomena, that is the raised female pulse rates and increased oestrogen levels when Jonny Wilkinson is brought on as a substitute late in the second half of any England match. 

Backs were definitely straightened, seating positions adjusted and cushions hugged a little tighter as the boy wonder turned man entered the fray.  The FA Cup Final is approaching and we will no doubt be told for the umpteenth time of the national power surge at half time as kettles all over the country are set to boil.  I think this Wilkinson effect may be similar and if we could only harness the increased energy levels (or the oestrogen) we might just be able to solve a whole host of global issues. 

Could it also be that this substitution is actually tactically unnecessary and made simply to appeal to women everywhere, persuading mothers that, despite the bent noses, the flowering ears and the ever present risk of serious injury, this might just be a game for their sons ?  Oh yes and also to ensure that they watch the game to the end.

On which note I shall finish.  This match will hopefully end on Friday and if all goes to plan we will have Janine home for the weekend.  Just in time for Ireland v England and another well timed substitution.

Antidotes and Adjustments

One of the fears I have had with this blog is that there is a fine line between being open and vulnerable and a descent into melancholy and self pity.

We listened to a talk yesterday which acted not just as an antidote to any tendency to make that descent but which also, for me, restored a sense of perspective.

The talk was by Bill Hybels, who leads Willow Creek Community Church in Chicago.  Some of you will know that it was one passage in one talk he gave at a leadership conference back in 2003 which ultimately changed my career path and resulted in me doing what I am doing now.

This talk is from last Sunday and is on ‘Finding Courage: Living Faithfully’.  The Bible passage he takes is Habakkuk 3:18-20 which is a passage Janine referred to in her talk on the dark.  It is a deeply challenging message and there are some very moving stories of faith and courage in the face of incredible adversity.  If you want to listen, you can find it here http://www.willowcreek.org/mediaplayer/playerHome.aspx?cid=3&id=14.  Thanks to Zoë for finding it.

In a similar vein are these thoughts from Rick Warren who leads Saddleback Church in California.  http://purposedriven.com/blogs/dailyhope/let-god-interpret-the-facts/

How about that line ‘Paul placed his faith in God’s identity, not in his ability to see God’s activity’ ?  It takes me back to the promise I mentioned in January, that God knows what he is doing even where we are unsure that he does. 

Thanks to Nicky for sending that link through.  It must have been easier than urgent calls in the middle of the night to come and stop the vomiting.

If you have been on Facebook today then you will have seen that Janine didn’t make it into hospital this morning.  As feared, there were no beds and the bed manager said that there is unlikely to be a bed now until next week although we should keep calling. 

There is something of a treatment crisis on the ward with some patients waiting since the end of Feb for treatment which sounded as though it was even more urgent than the chemo Janine is waiting for. 

With the sudden change of plans I suggested we head off to the cinema for what I consider something of a decadence, watching a film in the middle of the afternoon on a work day.  Not that I do that sort of thing - ever. I think I’ve managed it once.  It just seems the sort of reckless thing you should do. Ok, I know, if that’s my definition of reckless ……..  

Anyway, we eventually decided against.  Janine wasn’t feeling that great, it would have been an emotional risk and they would not have had enough tissues in the building.  The Adjustment Bureau had been the choice.  If I understand it, it’s a film about not necessarily having control over your future.  Hmm.  Interesting …………….. 

I’ll blog again if anything changes.

Gentlemen Prefer Blondes

There is absolutely no connection but it seemed appropriate that, in the week that Jane Russell died, Janine acquired a long blonde wig.

I will confess to finding the new look a little disturbing but it has generally been well received.  It was fun to walk into the back of church on Sunday and say I was looking for a blonde and she was saving me a seat.  If you were sitting behind us - yes that was my wife.

Anyway, this is a quick update to tell you that Janine’s platelets are back where they should be and if there is a bed available we can take her back in tomorrow and get started on the still dreaded but inevitable third cycle.  It wasn’t this way at the start of this morning.  Janine was told first thing that her platelets were still too low.  Unfortunately, the nurse had been reading last week’s blood test.  Oh dear.

So Floor 16 UCLH here she comes.  I wonder what the room and the view will be like this time.  Pictures will follow.

I’ll leave you with some words from a song that we sang on Sunday that never fail to lift me.

You conquered the grave

Now my debt is erased

You rule, you reign

Forever

Amen to that. 

 

The Occasional Wisdom of Robert Seger

This living a day at a time can be difficult.  Everything in my personality rails against it; the longing for certainty in what the future will hold, the intense desire to control events and outcomes, the at times seemingly endless analysis of the different paths our lives might take.

Even as I pray for blessing from God, I’m (at best) subconsciously suggesting how he might bring that blessing about.  As I come back to the hope of the good that will come from what is intended for harm, I know I have in mind the good I want to see and not the bigger picture.  We might never know and we might never see.

Each morning, when I remember, I have to drag my mind back and tell myself again that I must live well and live right and face the difficulties in this day, in this next 24 hours, and not beyond. 

Bob Seger had it right when he sang ‘we’ve got tonight’.  .

OK, I’ll grant you that the lyrics might not be exactly to the point, that I’d actually quite like tomorrow and that I am sure the relationship counsellors amongst you would advise the lonely and weary woman involved that, if her plans really don’t include Bob then spending the night would not be the wisest move she ever made, but at points when Janine and I are wondering if the future is limited, those four words are a reminder that we have today and we had yesterday and that we can be grateful for that.

It is Jesus who really got it right of course.  ‘Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own’ and ‘who by worrying can add a single hour to his life’ (Matthew 6: 34 and 27).  I think over familiarity means we allow those words to lose their incredible power to release us from so much anxiety.   

I am going to offend some of you with this but I also blame Marijohn Wilkin and Kris Kristofferson for writing the country hit ‘One Day at a Time’.  Whenever I hear the words ‘one day at a time’ that song and its steel guitars are there in my head in an inevitable Southern twang.  It really doesn't help.

When we left our heroine she was feeling better after a road trip to Hayling at the end of a week of tears.  There were more tears to follow over the weekend and into this week and some very dark moments again on Tuesday and Wednesday as the fear of the third cycle combined with a fear of the process of dying.  It is not that anyone has come anything like close to saying death will be the result of this but you can never say that this fear is irrational.  Death inevitably comes into focus at moments like this.  Which could take me back to valleys and shadows.

The last couple of days have been better.  For Janine it was important to be reminded again by our GP that she cannot be forced to have any treatment at all and that everything that is done is done by her choice and consent.  She ultimately feels no peace about not having the third cycle and so is getting herself ready for it.  The Lymphoma nurses have confirmed again how important it is.  They have also left open the possibility of some radiotherapy and a further chemo cycle but for now that is definitely a step too far.

More immediately, Janine has a few more days to recover.  Her platelets are too low for anything to begin on Monday.  Instead she will have a further blood test and if the platelet count is where it needs to be, she could start on Wednesday.  I’m not going to hold my breath though as there is also a backlog of patients needing treatment. 

I hope you enjoy your weekend. 

And yes, you will find Bob Seger on U Tube.  Go on you know you want to .....