Don't be afraid of the dark

For those of you who aren't part of Keirth Community Church we now have Sundays where we have ten different speakers speaking for 10 minutes across our three meetings.  They are proving to be fantastic Sundays and it is so good to see not just how many great communicators we seem to have but to see the different walks with God, the different life experiences, the different ages, the different styles and yet the one faith.  Simon our Senior Pastor, remarked again yesterday how privileged we are that this is not just about people having a go but that there is the opportunity for us to hear from God through everyone who speaks.

Anyway, yesterday Janine was one of the ten.  She was indulged slightly and stretched her ten minutes but if you weren't there and would like to hear what she said then you can get the podcast here:

http://www.kerith.co.uk/Groups/152753/Kerith_Community_Church/Kerith_Resources/Kerith_Sermons/Sermons_by_Month/January_2011/January_2011.aspx

I know I’m biased but there are some powerful words here and, having watched her journey (quite closely), I know there is more she could have said.

Having gone for the Annie Lennox look on Friday, hair loss upped the pace and so today the girl embraced the shorn look with all the grace and beauty you would expect.  If you haven’t seen the picture on Facebook, I’ll include it here.

Blood test tomorrow and then we should be able to confirm Thursday as the start of the second cycle.

The First Quarter

There has been a slightly unsettling normality to this last week.  Janine came through neutropenia very well and with nausea under control, the only signs that she might be having treatment have been the tiredness and the number of drugs and needles we have in the house.  We even have our own sharps bin.  I guess the daily visits from District Nurses might also be a clue and there was the night I was woken up by what I thought was (but somehow knew couldn’t be) the dishwasher beeping downstairs and which turned out (on the second time of checking an hour later) to be Janine’s syringe driver telling her there was an air lock.  Fortunately, there was no repeat of that scene in Airplane.  You know the one where ….

There had also been the ‘what’s this back pain – ah OK its just a side effect of the daily injections’ and the ‘that doesn’t sound good’ cough moments but they passed, serving only as a reminder that, beneath the surface, you can’t quite relax and there is a natural, ongoing fear of what might be round the next corner.  Janine has been very gracious over my constant requests that she check her temperature.  You’d think we were  …. No that would be a miracle, believe me.

This morning, reality crept back in as Janine started to lose her hair.  I’ll confess to feeling upset when she told me even though we knew this was inevitable.  Yet part of me was also relieved.  It isn’t something Janine is too concerned about and I was beginning to think it wouldn’t start until much later in the treatment or even after the last cycle, which somehow wouldn’t have felt right or even fair.  I think Janine carries it beautifully and she has already taken it on.  Today’s hero was ‘hairdresser to the stars’ Elaine Lewis who came round this evening to help create that Annie Lennox look.  Next up Sinnead O’ Connor but keep your eyes out for the Beyonce wig.

If all continues to go well then Janine will be back at UCLH next Thursday for round two of the chemotherapy.  I can’t remember what I have said before but the latest plan is for a definite three cycles, a four week rest and then a scan to see what has happened.  That takes us to the end of March. 

Maybe just maybe this will all be done in three months.

Neutropenia

‘From Latin prefix neutro- (neither, for neutral staining) and Greek suffix -πενία (deficiency), is a hematological disorder characterised by an abnormally low number of neutrophils, the most important type of white blood cell, in the blood. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis)’

I also think it would make a good name for a band, or at least a first album.

Anyway, with the nausea under control, today is officially the day that Janine enters her neutropenic phase.  Temperatures are being checked regularly and visitors will be subjected to a full body scan and intimate questioning about their current and previous medical history.  We have our emergency numbers and procedures but if we could avoid a rush down the A329M to the Royal Berks that would be good.

It probably wasn’t the best day for our boiler to break down.  Well actually it broke down yesterday and should get fixed today.  This time we need to thank that Macmillan Nurse of all our domestic appliance and house crisis, Steve Fazey who very kindly came straight round last night and worked out what needs to be done.  He had only said to me on Sunday that he was very concerned at the thought of me (DIY = Don’t Involve Yourself) being left alone in the house.  Hmmm.

The only other news is that all being well, Janine should be back in hospital on the 3^rd February for the next cycle of treatment.  She will then be scanned to check on progress and decisions made as to whether a third cycle is needed. 

I’m not sure who wrote them yet but two friends have sent us the following fantastic quote in the last 12 hours:

'Cancer is limited: it cannot cripple love, it cannot shatter hope, it cannot erode faith, it cannot eat away peace, it cannot destroy confidence, it cannot kill friendship, it cannot shut out memories, it cannot silence courage, it cannot invade the soul, it cannot reduce eternal life, it cannot quench the spirit, and it cannot lessen the power of the resurrection.'

Powerful words to take into the weekend.  Challenging as well, of course, because you could allow your experience of it to do exactly some of those things.

   

Drug Running

There have been a number of ironies over the last few months, some major and some minor.  There was the 5 year ‘potentially cured’ check up, a new diagnosis at almost the same time of year to the day as the last, a secondary malignancy from the treatment that dealt with the first, the same nurse putting in the PICC line as six years ago.

On Saturday, I experienced another of the minor ironies.  Unwrapping the Saturday Guardian supplements in Janine’s hospital room out tumbles the magazine landing face up on the bed with a cover picture of hundreds of bald people standing at supermarket checkouts under a headline ‘Cancer: The New Normal’.  ‘Awkward’ as my kids might say. 

I wasn’t sure I should read the article but I did and, if you are interested it’s worth a look.  The writer, Siddhartha Mukkherjee, has just published (of all things) a history of cancer.  The article is edited extracts from the book and the basic premise is  …. well I shall leave you to find out should you want to.  And please do only read it if you want to.  Here’s the link http://www.guardian.co.uk/world/2011/jan/15/cancer-the-new-normal

If that’s the theory what about the practice.  If I had written this yesterday, I would have said that Janine was through the first round of chemotherapy and, to borrow a boxing analogy, ahead on points.  She had her last drug overnight on Saturday and, feeling very tired and queasy but well enough to travel, she opted for me collecting her and bringing her home yesterday afternoon.

That all changed late last night and the poor girl has been flat on the canvas for the last 24 hours being sick (or trying to) what seems like every half hour.  Those who remember her experience last time will know what this means to her and we are just hoping it can be got under control.  It’s been a day of chasing down anti – sickness prescriptions whilst waiting for our GP and District Nurse to come tomorrow to fit the anti sickness driver which worked so well before and stabilised everything.  I need to thank our fantastic friend and ‘personal’ Macmillan nurse, the one and only Nicky McKean for going well beyond the extra mile this evening in helping get what we think Janine needs.

Looking further ahead, it should be that Janine has 17 days at home recovering before, blood tests and so on permitting, it’s back up to London for round two.

I have another picture for you to add to the balloon popping and chomping Pacman.  Another friend of ours, Anne-Kirsti, was at UCLH on Friday and able to come and see Janine ( brilliant in itself).  She said that the chemotherapy acts like a liquid poured over ice cubes to melt them.  And, from what we can see, the lumps in Janine’s neck certainly have started to melt.

I haven’t been in the best frame of mind at periods today so I need to write down some things I am thankful to God for; GPs who stay late to give you prescriptions, out of hours phone lines, pharmacies that are fully stocked and within reach, clean water from a tap, a toilet that flushes, a house that is dry and heated, a bed to lie in, a car for getting where you want to be, anti sickness drugs, dettol, ice cubes (the real ones not the analagous ones), (again) the people who have done the work today that we should have been doing.  I could go on - perhaps you could fill in the gaps.

Something for the Weekend

I realised this morning that it would be impossible (and stretch your patience) if I were to try and blog every time there was a change in how Janine is feeling during her chemotherapy.

However, just to let you know if you read last night’s blog, that the problem was the PICC line being inserted too far so that the drugs were delivered too quickly.  Once that had been sorted, Janine began to feel much better.  She seems to have done well during the day and is about to have the Rituximab which according to the latest member of the team, chemo nurse ‘Sunderland’ Fiona, could make her feel a bit funny and requires observation every 15 minutes.  Interesting.

One thing that has been clear this week is just how far technology has moved on in 6 years.  Mobile phones on wards are now not an issue, I can sit in the room and send emails, there is Facebook and blogging etc etc …. In that spirit (and for the detailed nerdy types among you) I am going to post a copy of Janine’s drug schedule which she photographed and sent through to me. 

As you will see, she could be ready to come home at some point on Sunday.

I’ll let you know when Janine is home and what things look like from there.  Otherwise, barring any major developments, I’ll be quiet.  I hope you all have a great weekend.  

Drip Feed

Today was another day of waiting.  This morning the doctors confirmed that they are looking at a potential three cycles of treatment (not two) with a scan after the second cycle to see how things are progressing.  To be honest, we will know if the treatment is having an effect because the lumps in Janine’s neck are increasingly visible and they will presumably shrink.

This afternoon we sat around reading the paper, eating sweets, checking out the Lakelovers brochure, checking out facebook, checking texts, taking in a change of scenery and sipping Assam tea from paper cups in the ground floor café - generally just killing time.  I also read through an essay from Ellie on the homoerotic and tragic flaws in Thomas Mann’s ‘Death in Venice’.  We have clearly come a long way since ‘We’re going on a bear hunt’.

Just as I got on the train to come home, Janine txted to say things were underway.  I need to get my head round the names of the drugs.  There are three actual chemotherapy drugs; Ifosfamide, Carboplatin and Etoposide.  Hence the regime is known as ICE.  There is then a monoclonal antibody (hark me) called Rituximab – hence R-ICE.  It looks like Etoposide is coming down the line first.

Those of you who remember how sick Janine was last time will understand that she desperately wants not to feel so unwell this time around.  It was something of a setback therefore to call her a few moments ago and find she is already feeling unwell as one of the anti-sickness drugs may have been given to her too quickly.  She is also getting a few heart palpitations so her PICC line needs to be checked out.  Tomorrow could be a tough day.

A couple of my wonderful, wonderful colleagues at CAP had some great visual images of what we want the chemotherapy drugs to do.  One saw them travelling through Janine popping the cancer like balloons.  The other saw a Pacman chomping through it as only a Pacman could.  Wild and wacky - but helpful imagery to us in praying.

There is something bubbling under in me about how we talk about levels of difficulty in life, comparisons with the experiences of others and gratitude.  I want to call it ‘I shall not complain’ but it is for another time.

Over the last few days, I have been trying to put myself in Janine’s position – and the position of anyone undergoing any chemotherapy.  What must it actually feel like to know that such powerful and, in themselves, life threatening drugs are being pumped into your body ?  You know you have no choice if you want to be cured, yet you know you are going to feel very unwell before you feel any better and that any infection takes on a whole new level of seriousness. 

I hope I would have the faith and the courage and the perseverance I see in Janine.  I know where it comes from.  I suspect you do as well.

  

The View from the Top

I managed to burn oven chips last night.  Actually, if I am honest, I managed to cremate oven chips.

Now I know what you are all thinking, first night Janine is away and not only is it junk food but he can’t even cook that properly.  In my defence, I shall claim that I used the timer on the oven, the boys had already eaten, we did have peas (they didn’t look too good either), I had eaten two apples and am a regular taker of multivitamins and cod liver oil.  I would also claim to be able to rustle up a pretty good Jamie 5 hour lamb, a mean stir fry, the occasional curry, chilli, and, my children’s favourite, a tuna pasta bake (now with the added something of chorizo sausage).  I can tell you are still not convinced.    

Apart from this episode, all went to plan yesterday.  Janine is safely installed on the 16^th floor of UCLH.  It’s not the weekend break in London you might plan but she has a great room with her own bathroom (these things are very important) and a really good view across London.  Somewhere on here there should be a picture of her choosing between the set and a la carte menus.  The recommendation from the nursing staff was to go Afro Caribbean as the food actually tastes of something.

It was a day of preparation and tests.  Her PICC line went in very well (if you are wondering what this is see here http://www.cancerhelp.org.uk/about-cancer/treatment/cancer-drugs/how-you-have-cancer-drugs#picc – remarkable isn’t it) and if the blood and kidney tests come back OK then the chemotherapy proper will start this afternoon and continue through to Sunday.  The anti sickness drugs are being delivered already.  Janine thinks she knows what is coming.

I’ll finish off this post by praising Ben and Sam.  I know they are older than they were but they just got on with what they needed to do both yesterday and this morning without any trouble.  Sam even dragged himself out of bed at 6 to be at school early for a pre GCSE exam revision session.  And they didn’t burn their oven chips. 

 

Best laid plans and all that

For starting on Monday read Wednesday.

Really should have remembered that the plans will change regularly.  Janine needs to have a PICC line which involves a minor procedure which can't be done until then.  

This time I though I would post a picture of the building where Janine has been having her check ups and where the haemotology  team is based.  It doesn't look any less gloomy in bright summer sunlight but its the quality of the people inside that counts.  Only just noticed the Post Office Tower in the corner there.  It will give you an idea of where this is.  Is there still a revolving restaurant at the top of that thing ?

Battle Plans

We had something of a long wait for the appointment today.  Two and half hours at least.  Longer than an Australian test innings (sorry, couldn't resist that - haven't been able to say it much in my lifetime). 

It's not the most attractive or comfortable waiting room either and we hadn't thought about food.  It was veggie soup from the machine and a late afternoon rush to a well known but over priced food and coffee outlet to throw money at the problem.  I don't know how many times we have sat in that room over the last few years but I only realised today that the drinks from the machine are free.  I'm a lawyer - details like this are supposedly my strong point.

I remember now that, with each step, you learn and understand a little more.  The plan is to start the treatment on Monday or Tuesday next week.  There are blood and kidney tests to do first and there might not be a bed but that's the plan.  Each cycle of treatment will start with 3-4 days in hospital then, if Janine is well enough, home for 21 days to recover before the next cycle begins.  

We had thought there would be six cycles originally but it could be that two will be enough.  That would mean finishing much earlier than we had feared but we shall see.  Janine is officially 'special' and so there could be tests after the first cycle to see how she and the tumours are responding.  The potential side effects are what you would expect and the doctor we saw today described this regime as 'potent' which I thought was a good word.  Added to the side effects is the small risk that this treatment may also result in a secondary malignancy years down the line - this time leukaemia.  This stuff obviously messes with your cells as well as your head.

I'll post a picture of the hospital for those who would like to see where Janine will be.  She will have a room to herself on the 13th or 16th floor so the views should be good if nothing else.

Tonight she is pretty wiped and the lump in her neck has grown and is becoming increasingly uncomfortable.  A few more days won't be a problem in that respect but it will be good to get started.  Then again, do we have to ? 

Thanks again for all the prayers and the messages and txts.

Now, how long are England going to take to finish this off.  I need an early night.

 

Promises

Well that’s one promise broken already.  I said I would do this on New Year’s Day and here we are on the 3^rd.  Under promise/over achieve, under promise/over achieve ……..

I wanted to put down in writing as early as possible three promises I believe God has impressed on me over the last couple of months.  One came through a blog (thanks Catrina), one during worship one Sunday morning (thanks Amanda) and one through a prayer (thanks Simon).  I appreciate that for some reading this that might sound a bit weird but I shall simply quote that veritable sage of modern thinking, Miranda and ask you to ‘bear with, bear with’. 

For those of you who are going to see us more regularly over the next few months, hold us to these and keep us accountable:

·         God is the Lord our God who takes hold of our right hands and says to us ‘Do not fear, I will help you’.  (Isaiah 41:13)

·         God knows what he is doing even when we are unsure that he does.

·         This is intended for harm but God can use it for good.  He will also provide for us (Genesis 50:20 and 21). Dare we ask as well that it results in the ‘saving of many lives’ ?  How would that work out ?

I was also going to tell you something I heard Janine say during a recent talk but apparently she is going to use it in a forthcoming 10 minute message at church so her editorial rights have been exercised !

What I can tell you is that both of us know that, at the end of the day, our faith in God is more valuable and precious to him than anything else and that whenever we go through a testing period in our lives there is an element of that faith being tested and (we hope) proved genuine.

It’s also time to give thanks for a few things because I know that, in reality, we live very privileged lives :

• Ellie, Ben and Sam, who reacted so brilliantly last time and have done so again.  We could not want for better and we love them.  That’ll embarrass them …

• The NHS.  I know we only have our experience but it has been first class and Janine has been privileged to be treated by people who are right there at the top of their field.

• Chemotherapy.  It might be a harsh and very unpleasant (and its not me who has been through it of course) but isn’t it amazing to think what can be done and how treatment has developed ?  Even now, it looks as though a part of Janine’s treatment will be the use of a regime that was only trialled between 2006 – 2008. 

• Our employers and particularly those who are inevitably going to pick up work we should have been doing.  Janine is taking what could be six months sick leave from Brakenhale and the support there has and will be great.  I work for two exceptional organisations with a true dream team and the same applies.

And then there is you.

Janine has an appointment with her consultant on Thursday.  I’ll let you know if there are any developments from that.  Hopefully we will have a date for the start of the treatment.