Done

When we were told back at Christmas that Janine’s treatment would last six months, I wasn’t sure that could be right.  Surely three to four cycles of chemotherapy couldn’t take that long when they were every three weeks.

But here we are six months later and with the treatment only just finished.  Not that we can complain as the treatment has done what it was intended to do and the scan Janine had last week showed that she is still in remission. 

We saw the consultant on Thursday to confirm the results.  He said what we all know which is that only time will tell if Janine has been cured but he thought there is a good chance.  We are back to living with uncertainty.  Not that it had ever really gone away and not that we don’t actually all live with uncertainty every day of our lives.  We just make assumptions. 

From here it is about Janine recovering fully and returning to the world of the check up.  The annual check up for the sarcoma and, initially, the three monthly check up for the lymphoma.   

Janine asked the consultant if he had ever seen a one legged sarcoma patient with lymphoma before.  No he said – you are unique.  Didn’t we all just suspect that.  Of course the question of whether he has seen a two legged sarcoma patient contract lymphoma remained unanswered but I suspect not.  He said he had looked back at the chemotherapy regime from last time and only one of the drugs carried the risk of a second cancer and at the time would have been considered low risk.  In his terms, Janine had been ‘triply unlucky’.

Where does faith come into all this ?  We can’t say that God will not let the cancer return.  He allowed Janine to have it first time round.  He allowed it to return.  He has allowed others to face it and even to die. 

We often quote Jeremiah 29:11 when we want to encourage people about the future God has for them. 

"'For I know the plans I have for you' declares the Lord, 'plans to prosper you and not to harm you, plans to give you a hope and a future'".  

I’ve been thinking about this verse for a while.  I’m probably slow on the uptake but ‘harm’ and ‘prosperity’ and ‘a future’ cannot mean what we immediately think they mean.  From our perspective God has allowed Janine to be harmed, not least in the amputation, and the future she has is not the future she would have hoped for.   This promise must be about ultimate fulfilment and ultimate realities and the things that God values not being the things we value.  It cannot be about comfort and ease and an absence of suffering or difficulty.  It applied to all of the heroes of faith described in Hebrews 11.  Some of them lived destitute lives, living in caves and holes in the ground.  Others were tortured, stoned, flogged, put to death by the sword and sawn in two. 

I’ve looked back at the entry I wrote on Promises in January.  We still have so much to be thankful for.  God has fulfilled and is fulfilling those promises.  We have had fantastic support and encouragement and help.  At this point, Janine could not be in a better position.  And much, much, more.

I am probably not going to blog every time Janine has a check up or every time she feels unwell.  That is just going to happen.  In fact, I think Musing and Leanings might take a break and return in a different format.

For now, thank you for following and reading over the last seven months and for all the encouraging comments, the emails and the FB messages.  I still wish I had been able to reply to everyone but I didn’t manage it. 

I shall leave you with a picture of the most irrepressible woman I know.

   

    

Sixes

Six games to a set, 6 balls to an over, 6 cycles in a treatment regime.

I may be stretching the point but perhaps there are some common themes to our summer.  Actually, that really is stretching the point isn’t it but I needed an introduction, Janine is lying on the sofa watching Andy Murray, I wish we were watching the cricket and it all sort of came to me.

The fact that Janine is lining on the sofa tells those of you who don’t know yet that she has finished that last cycle of chemo and is home recovering.  In fact, she has been home a week and, having recovered very well with minimal side effects, enters her neutropenic phase today.  She even felt well enough last night to grace the Brakenhale School Prom.  “I’ll only be an hour”.  Yeah, right. 

The plan from here is a scan on the 4^th July, the results on the 7^th and, provided these show she is still in remission (and there is no reason at all to think that they won’t) to have her PICC line removed and to begin recovery in earnest.  I might reflect then on the last six months (aha !) but I thought for now I’d finish with some pictures of the first and the last visits to T16.  I'll leave you to decide what they might show.  I'm simply going to thank God that we are here where we are now.

The Sixth Cycle

I imagine it is a sign that some of the intensity has gone out of a situation when the frequency of blogs on the subject dies down.  Well at least that’s what I’m telling myself as I realise I haven’t written for a while and haven’t even kept you up to date with how Janine fared with the 5^th cycle of chemotherapy.  Very well is the answer to that and it was the best cycle yet both in terms of the side effects during the treatment and in the recovery.  Neutropenia passed by without so much as a degree in raised temperature. 

This is not the most elegant description and does not do justice to what remains serious treatment but these last few weeks really have felt like the fag end of a process.  You can feel thoughts starting to turn to life post treatment and the new - new normality to which we will need to adapt.  We’ve started asking about the programme of scans and check ups, the symptoms to watch for and how all this will fit with the scans and check ups for the sarcoma. 

Janine asked twice during cycle 5 whether cycle 6 is really necessary and was persuaded both times that it is though by different (and probably self-evident) arguments.  One that, should the cancer return, she would forever be wondering whether the 6^th cycle might have prevented it.  The other that the likely next form of treatment would be stem cell transplant and she would want to give herself the best possible chance of avoiding that.

So we wait for the sixth cycle.  It should in theory have started this last week but didn’t.  Having thought that it would be good to have half term at home, Janine had asked if the cycle could be put back to at least tomorrow.  Last weekend, however, we talked it over and decided she might as well get on with it.  A bed became available on Wednesday but a random stomach upset meant she couldn’t be admitted.  That cleared up on Thursday but by then the bed had gone and it has not yet become available again.  We had thought she might be able to get in this evening but now even tomorrow is looking unlikely as there is no movement on the ward.

One of the things we can be thankful for over the last few weeks is that Janine did make it to her brother Matthew (Theodore  - it’s a family joke and you had to be there …)’s wedding to Sarah last weekend.  As some of you know, this was naturally a big date in The Patient’s calendar and she was determined to get there.  Dresses, shoes, bags and bling were purchased, wigs restyled, nails manicured and hotels booked.  The question was whether she would feel well enough to be there and, well, she did which was great for all concerned.  We had a thoroughly good time.

There really isn’t much else to tell you unless I were to bore you with the mundane comings and goings of what, for the most part, has been normal family life for the last month.  I can’t even say I have had any musings or leanings that are worth sharing.  I’ve sold our second car, been attempting to flog everything that isn’t nailed down on ebay, and generally trying to clear and tidy up - all of which you might want to analyse (reverse nesting of some sort ?).  I also got unduly excited about the most efficient way to hang the washing on our new rotary drier – but I’m taking that as a sign of the phase of life I am in and the assumption of certain domestic duties on my part the last time Janine was unwell, rather than a sign of impending emotional crisis.

I shall let you know when this cycle is done.  After that, we shall see where this goes.

Enjoy your week.    

  

A week is a long time in .............

After a week waiting for a bed, Janine went back into hospital this afternoon and will start her 5^th cycle early tomorrow morning.  I expect that is dependant on the blood and kidney function tests she had this afternoon but I am sure they will be OK.  Put it like this, I wouldn’t want to be the one assigned to tell her they are not and that she needs to come home and wait until either her blood levels or kidneys have recovered.  If she were told, as before, that her kidneys have suffered and that she can’t have the last two cycles at all, well that would be a different story.

Whilst Janine underwent some tests, she also undertook one.  I’m afraid I don’t know the detail or the background but she seems to have got involved with a lemon drizzle cake tasting competition amongst the nursing staff.  I’ll post a photo below and try to establish the outcome for a future blog.  I wonder, however, if this is all part of the Lib Dems’ newly discovered plans for the NHS …….. ?  Lemon Drizzle  …………. no I won’t go there. 

The armchair psychologists amongst us will all, I expect, subscribe to the commonly held theory that what emotionally turbulent periods like this need is a distraction.  I hinted last time I wrote that there had been such a distraction for me over the last few months and, as it reached its conclusion last week, I feel I can now openly confess what I have been up to.  No, I wasn’t involved in any of the planning for the wedding (best I keep off that subject frankly).  Instead, and this is very mundane and you can stop reading now if you like, I was a candidate in the local elections.  I know, I know, I know ………. what was I thinking and, as some of you said to me, don’t you already have enough to do ?!  In truth, I had committed to this just as Janine was diagnosed and we agreed I should pursue it as best I could given that the next elections are 4 years away.

I stood for the ward where we live and, in my more realistic moments, knew we required a major swing away from the incumbent Tories and the Lib Dems if we were to stand a chance of winning.  In the end, we put a major dent in the Tory majority and saw the Lib Dems off but it was not enough.  As I said on Facebook on the night, for the time being, the wonderful people of Wildridings and Central have released me to spend more time with my family and pursue other options.

The campaign was a great experience and even though the timing was lousy, I would do it again.  I met new people and made new friends.  I found areas of the ward and houses which I did not know existed.  I met some very angry and distressed people, some disillusioned people, some committed people and some apathetic people – all in the same street.  I found strong, established Tory voters living in very close proximity to self declared socialists.  I found out that I can travel a long way out of my comfort zone for an extended period of time and still survive.  I saw a dark competitive spirit within me that, whilst it may not have a killer instinct (ask my dad about the Surrey County 800m final in 1982) could, if unchecked, lead me into bitterness and resentment and to despising people I may not like but cannot afford to despise. 

I was blamed personally for bankrupting the country and ‘letting in all those immigrants’, discovered that the modern letterbox is an instrument of torture, established that one man’s carefully written expression of social democracy is another man’s junk mail (and he really really doesn’t want it put through his door), and went through a pair of shoes.  I was canvassed by our Tory MP who clearly hadn’t read his canvassing sheets, and was told I was a disgrace for delivering leaflets on the day of the wedding when it was already all over (even the kiss), the person who spoke to me wasn’t watching the coverage either and no one had told me we had created a new Sabbath.  I became sick of seeing my face on the leaflets we were distributing but obsessive about getting into secure blocks of flats to deliver them.  I found on the night, to misquote the advert from one of the internet gambling companies, that where a cross appears on a ballot paper really does mean more when your name is on it.  And much, much more.  I do feel ever so slightly bereft now it is all over.

As this has been more of a leaning than a musing, I’ll finish with some thoughts on fair votes.  The ‘no’ campaign for the referendum made great play of first past the post being about one person/one vote and therefore ‘undeniably’ fair.  Whilst I appreciate that AV may not have been the complete answer to this, what that argument fails to recognise is that, when it comes to the composition of a Council or a Government, we may all have one vote but under constituency based first past the post, those votes do not all carry the same weight.

In the Bracknell local elections, for example, 63% voted Conservative, 29% Labour, 4% Lib Dem and 2% Green (plus some others).  With a Council of 42 Councillors you would think that would mean 27 Conservatives, 12 Labour, 2 Lib Dems and 1 Green.  Instead what we have is 40 Conservatives and 2 Labour.  Is that a fair ?  I’ll leave it with you – though it seems you won’t now really need to think about it for a very long time.

One and Two Half Men

I realise I have been a bit quiet over the last couple of weeks which may, of course, be a relief to many of you.

There are a number of reasons (including the Great Distraction which I will tell you about another time) but mostly revolving around a busy period family wise.

Anyway, to bring you up to date if you don’t know, Janine was back in hospital for the first of the additional cycles on the 11^th April, just days after the scans.  It’s funny isn’t it but all those times you want to get on with the treatment and there are no beds.  The time you want to delay a couple of weeks and the medics want to press on and a bed is available almost immediately.

Generally, the cycle went well.  Having gone in on the Monday evening, Janine was able to come home on the Friday afternoon.  There were some frustrations around the length of time it took to get all the drugs together so she could leave but, with nausea under control, the main side effect has been tiredness and a self confessed irritability.  As you will appreciate, it is that much easier to live with when it is self confessed.  I shall say no more.    

With Ellie at Spring Harvest when Janine went in, it was just me, Ben and Sam at home – the one and two half men of the title.  Those that know them will know that ‘two half men’ is not quite accurate.  The reference breaks down still further in that there was no drug or alcohol fuelled inappropriate behaviour (at least as far as I am aware).  I think we handled and looked after ourselves very well and I’m going to take this opportunity to praise the two of them for being two fantastic sons of whom I am very proud.  I love their company, their different personalities, their gifts and strengths, their strong opinions, their tolerance of what I understand is my increasingly wayward humour and much much more.  I could not want for better.

As Ellie returned from Spring Harvest, Ben set off for a few days in unserer ehemalige Heimstadt Düsseldorf.  That left one man, two women and one half man, which doesn’t flow as well as a title.   This weekend we are all at home enjoying the uncharacteristic weather as much as we can.  Janine is probably neutropenic and can’t really go too far from home and Ben is recovering from an asthma attack in Germany.  I need to thank this entry’s heroes, Joesph, Damaris, Joel and Benny, not only for rescuing him and getting him treated but for giving him such a fantastic few days.

Janine’s next cycle of treatment should start sometime around the 2^nd/3^rd May.  She has had a long conversation with the nurses this week about the need for the extra cycles and the possibility of having them at The Royal Berks in Reading rather than in London. 

On the additional treatment, it's self evident really but the team are concerned about Janine’s history and they simply want to give her the best chance of the cancer not returning.  Janine and the nurse even had a conversation about the number of cancerous cells that can be present yet not picked up by a scan and the need to get rid of any of those that might still be lurking somewhere in her body.  Though Janine is desperate to get to the end of all this, understanding just that bit more of the ‘why’ helps in facing it. 

Watching the London Marathon last week, I was reminded of running it for the one and only time back in 1998.  Around the 17 mile mark I began to suffer badly and actually stopped and moved to the side of the road not sure if I could continue.  Someone from Reading AC recognised my running vest, moved over, grabbed the back of it and got me running again with a simple ‘Come on Bracknell, back in the race …’.  These last two cycles feel like the latter stages of a marathon.  You are running on empty, the adrenalin no longer exists or works, everything hurts, you are not sure of the need to finish or the benefit of doing so yet somehow, somehow you clock off those final miles and cross the line. 

    

    

 

Remission

‘The state of absence of disease activity in patients with a chronic illness, with the possibility of return’  Wikipedia

Which is where we are. 

The scans were all clear and in the words of Celia one of the Haematology Nurses, ‘This is brilliant.  It is as good news as you could have’. 

We have so much to be thankful for and I need to thank you all again for your prayers and support over the last few months.  Janine is very relieved as she really had thought there would still be traces of the disease.

The good news is tempered slightly by the need for the consolidation treatment we had suspected would be required.  It was never going to be any other way really.  As we drove home we were talking through the possibilities which we understood to be 1-2 more cycles of chemotherapy or some radiotherapy.  That weekend away was looking a little closer. 

By the time we got home, however, the team had met and they actually want to give Janine 3 more cycles of chemo.  This isn’t what Janine wanted to hear and as we only heard this via voicemail there are some questions to ask in the morning. 

We splashed out on the way into Bracknell on a bottle of Prosecco from a well known German discount retailer.  Contemplating the three further cycles, Janine’s plan changed from a family celebration to drinking the whole bottle herself.  Fortunately, it is still on ice as, after all the excitement of the day, curling up on the sofa with ginger and lemon tea seems to be doing the trick.

It could be that the further chemo will start as early as next week.  I’ll do an update once we know.

The Appointment

Janine had her scans today as planned and we travel up again tomorrow to get the results.  Well, I say the results, we are going to get a preliminary view and then there is a team meeting at which the detail of any future treatment will be worked out.  At least we will know what impact the chemotherapy has had and whether any future treatment is likely.

Up until yesterday, it had been a really good week for Janine.  She recovered sufficiently to spend three mornings in school marking books (I know, somehow you are not surprised), came to watch Ben play football on Saturday morning and inspired him to complete his hat trick (well that’s what she is claiming) and then spent the rest of the weekend baking and getting a birthday tea ready for my sister and the family.

That might just all have contributed, of course, to her feeling unwell, grumpy, tired and lethargic yesterday and today.  I dare say the prospect of the scans and tomorrow’s appointment may also have been factors.

I’m sure you can imagine what it is like waiting for one of these appointments and some of you will know the experience personally.  I don’t want to be over dramatic but I have been thinking back over the different appointments we have faced, trying I think, to place tomorrow in its history and context. 

The story began with an appointment with an Orthopaedic Consultant in Windsor.  It was a dark December afternoon and I thought we were going to see the back and hip pain Janine had been experiencing cured there and then with a bit of impromptu physiotherapy.  I’d been told during a medical that Janine’s health was causing me anxiety and that I needed to take a lead in getting the problems resolved.  I thought this was what we were doing.  Instead, the consultant seemed immediately concerned, sending us round the corner to get X-rays from the hospital and asking us to come straight back.  Within what was probably little more than an hour our lives were turned upside down and we knew that there was a tumour in Janine’s pelvis.  The journey had begun.

Next came an appointment at Wexham Park in Slough for the results of a biopsy.  It was nearer to Christmas, cold and wet and I remember driving there feeling as sick as I think I have ever felt as I wondered if we were going to hear that Janine had just months to live.  I remember Janine asking me not to let her die there on the cancer ward, coming away with no real understanding of what Janine had, buying pre chemotherapy drugs that were never used, the call later in the day to say the diagnosis had been wrong and  Janine’s tears as we heard ‘sarcoma’ and all that entailed. 

Months down the line came the appointment where we heard that amputation was the only option.  It was late on a Friday afternoon and we were sat in a dingy, dirty, poorly lit visitor’s room off the treatment ward at the Middlesex Hopsital.  On one level, it was perhaps the most significant moment of our lives in the last six years.  So much changed from that moment, though in reality it had been changing all along.  What I remember now is the rising sense of panic I felt on the train home, struggling desperately to come to terms with what we had been told, wanting to believe that this was all wrong, that it could not be right, that there would be a miracle and a reprieve.

Moving on we entered the world of the check up.  First 3 monthly, then six monthly and then what we thought would be annually.  Though each appointment meant less chance of the cancer returning, each seemed to become more difficult as we knew there was more to lose.  Each day seemed so ordinary yet I would be telling myself that it would be on just such an ordinary day that we would hear the worst.  There would be no warning, just white spots on an X ray.  We would drive back, me usually the more exhausted, calling and texting and knowing that we could breath again  - that there were at least a few more months of freedom.

Eventually, of course, it would not be at an appointment like this that we heard that cancer had returned.  The lumps in Janine’s neck were too much of a warning and by the time we went for the results of this biopsy we knew what we would be facing.  We were also more experienced and knew more of the world Janine would be re entering.  This appointment was marked by, well I guess a resigned efficiency.  We thought we knew what we needed to know, what we needed to ask and what the process would be.

Which brings us to tomorrow.  How do we feel ?  I don’t know and perhaps that’s best.  I’ve sensed some anxiety in both of us.  I know we have vacillated between believing this is all done and dusted and fearing that the positive prognosis was all wrong.  This time tomorrow we might be able to so some planning, to accept some outstanding invitations, to see if we can get to the Lakes for a weekend and somewhere near a beach in the summer. 

As above, I expect we will actually be faced with continuing uncertainty and planning will be on hold for a little longer.  Even if Janine can walk way tomorrow then we are back to the check ups.  More than that, I would be amazed if, even if the scans are clear of all traces of the disease, we were told that no one was suggesting any further treatment.  I am still a lawyer at heart.  We like ‘belt and braces’ and making sure and I am sure medics are the same.

What I do know for certain is that I will let you know and as soon as I can. 

          

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 ..... 

 

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.