13 October 2024

‘My times are in thy hand‘ Psalm 32:15

It is somewhat disconcerting when you notice that your credit card- or let’s face it pretty much every item in the kitchen larder – has a more favourable expiry date than your own. To be outlived by a packet of Walkers’ Ready Salted…ooh, that’s harsh. 

We have only asked about my prognosis once, right at the start, where we felt we should know what it would mean if I couldn’t have any chemo at all.  ‘Weeks to months’ came the fairly shocking answer. 

Happily of course I fought for chemo, which upgraded the prognosis to “less than 12 months’. This was conveyed to me indirectly last November: one of the Macmillan finance team was applying on my behalf for a Blue Badge and a couple of benefits that I was entitled to, and as part of the process asked me:

‘So have they said how long you’ve got?’ (You soon become quite tough-skinned in this game…and I’m not sure whether I’m referring to myself or the Macmillan lady…)

‘No,’ I answered, ‘I haven’t wanted to ask.’

‘Don’t worry,’ the lovely lady reassured me, ‘I can find out, and can let you know if you qualify for the Special Form which means your application will be fast-tracked.’

Of course I immediately googled what this form could be, and quickly discovered that it is something that can be accessed if it is considered that you have less than a year to live.

Macmillan Lady called back the next day.

‘You do qualify for the Special Form!’ she declared, almost triumphantly.  To be fair she probably did have reason to be happy about it: the Special Form is apparently a lot shorter and more straightforward to fill out than the regular one…her work day just got a whole lot easier.  

It was good to quickly receive both my Blue Badge (much needed last autumn and now super handy for chemo crash shopping trips) plus a little financial help to reflect the fact that the phrase ‘sick pay’ is not in the vocabulary of a freelance musician.  Yet the knowledge I now had sat rather uneasily within me… a year would be next Autumn, as Isaac was starting secondary school: would I be gravely ill in the summer holidays?  What if I limped on to Christmas, stubborn as I am, but then it happened over Christmas itself? 

Of course I grew to realise that I did not need to think like this.  Firstly, I believed that everything would happen in God’s perfect timing and will be right.  Secondly, once I started treatment (and particularly when we moved to SuperProf) it was quite clear that every individual is different and no-one is able to tell exactly how you will respond.  There has been been no prognosis from SuperProf and I’m not sure he would even give one if asked. (Another thing we have observed is how the very cleverest medics, the Profs and Docs at the top of their field, are the ones who aren’t afraid to admit what they don’t know…)

Anyway, it is good that I didn’t take that early estimation too much to heart, as today is my official Best Before date!  Yes, 13 October, a year exactly since Steve and I sat in a consulting room to be given the news that would change our lives instantly and entirely. 

It does seem like an achievement to have reached this point and I couldn’t be more grateful.  We still can’t look more than a few days ahead; well,except apparently when Oasis tickets are involved…  Michael bagged a decent number of tickets (I know, I know, ’twas a more meticulously-plotted operation than the D-Day landings) and was able to offer one to Steve.

‘How’s next July looking?’ Steve asked me casually.  ‘Would it be alright if I went?’

What?

Next July? 

As in, July 2025? 

I was rather dazed at this so replied automatically: ‘That’s fine with me!  You will love it!’

Steve has been down in the mosh pit with Michael and his mates on more than one occasion, whereas my idea of a cracking concert would be one featuring late 19th century orchestral works…  I was more than happy for Steve to go. 

However, next July!   I couldn’t imagine it… The reply that I had in my head but did not come out of my mouth went a bit like this:

‘Well, I’ll try my best not to pop my clogs around then: I know what it took to get those tickets…’

But back to today, and the one year Cancerversary; should have bought the Tumour Crew a card, except that might just encourage them…. A better way to celebrate this milestone was to cheer the Purple Powerpuffs on in the Bournemouth Half Marathon for Bowel Cancer UK.

For most of the team it has been a difficult journey involving a lot of commitment, determination and mind over matter.  In my situation I have been forced to find reserves of strength and endurance that I didn’t know I had, and it has been brilliant to see my family doing the same in the context of their own challenge.  I am so proud of them.  

Issac set the stage yesterday by running the kids’ 2k event- he isn’t a natural athlete (or so we thought!) but trained hard and showed utter determination to achieve a time of 8:23 and 20th place out of 207 runners.  He was without doubt spurred on by the amazing support and generosity from his friends, teachers and others that resulted in him raising over £1000 for Bowel Cancer UK. 

And today it was the Purple Powerpuffs’ turn to shine.  They too have been so buoyed up by the incredible support of others.  It gave us all a big lump in our throats to receive surprise video messages from Stagecoach Stevenage, where Ariane is a tutor: the whole school had come dressed in purple and recorded messages for both Isaac and the Powerpuffs. 

The team were absolute stars and finished in one piece with superb times and huge smiles.  When they signed up for it months ago I remember Michael telling me I would be there to cheer them on but not fully believing it myself.  The boy was right again…

Another Sunday night, another journey back to Herts, another chemo cycle looming… But!  This may be the last one in a little while, for the Prof has agreed to make a definite decision about surgery when we see him next on Thursday 24th.  If the tumour markers are still stable at that point then the big green button will be pressed and I’ll be on the butcher’s block just 10 days later.  Ooh! 

 If there was ever a time to sing ‘Come on Irene’, this is it… She has been doing so well but is flagging a little and in need of a holiday (tell me about it…).  These days it’s all she can do to hold the tumour markers at the same point: come on, Irene, hopefully we can all have a little break soon… (makes you wonder when you consider major cancer surgery a ‘break’, but hey ho!).

‘And though the Lord give you the bread of adversity, and the water of affliction, yet shall not thy teachers be removed into a corner any more, but thine eyes shall see thy teachers: And thine ears shall hear a word behind thee, saying, This is the way, walk ye in it, when ye turn to the right hand, and when ye turn to the left.’ Isaiah 30:20-21