‘The joy of the Lord is your strength’ Nehemiah 8:10

Tuesday 9 July

What’s better than the cancer rollercoaster? An actual rollercoaster of course!

Yup, that’s me, hanging upside down and loving every minute. Photo taken by Isaac, whose thrill-seeking gene is not yet fully developed… Oh, the irony of the 10 year-old watching his 50-something parents fly above his head screaming like demented banshees…

Today should be chemo day but thanks to the pre-Cyprus treatment ban we were able to arrange a couple of days at Chessington for rides and animal fun, staying in the Safari hotel overlooking the animal reserves.

We had a blast: the girls and Jasper joining us for the day yesterday which was great fun.

Theme parks are most excellent for exercise: we walked a good 10k each day. Isaac slept most of the way home and Steve declared that his legs were done for. Me? I felt great… It is almost impossible to get my head around the fact that I feel so very well when not under the spell of the chemo witch (sorry Irene, don’t take it personally), yet that two-faced witch is the very thing keeping me alive; if only that was an over-dramatic statement…

Where did I leave you last? Ah yes, with my impending face-to-face consultation with SuperProf last Thursday. It was great to see the lovely man in person even if I was too entranced by him to instigate my Biceps Display. After an encouraging chat he made the most of the fact that I was more than a pixelated image to examine my tummy, which had been rather swollen and painful for a few days. That was very novel as the other baffling thing about having cancer is that no-one ever actually comes near you to see what’s going on; it’s all about the numbers on the page or pictures on the scan. SuperProf declared that he could see nothing to worry about but suggested another blood test just to be sure. That’s SuperProf, super-thorough in every way. He also told me that he has referred me for specialist physio and to see a renowned guru in pain medicine and chemo-induced neuropathy, Matt Brown. I have heard amazing things about Doc Brown and shall have to think of a name for this new character in the story- ideas on a postcard…

I did venture to ask SP about possible future projectory but he skirted over that one and rightly so…there is no place for that at the moment. ‘All is good now,’ he assured me. ‘All is good.’

After the appointment and impromptu blood test in the LOC basement prison, sorry treatment suite, it was wonderful to meet my friend and ex-colleague Gabriela for dinner in Chinatown and to see the incredible show Standing at the Sky’s Edge, in which a St Joe’s mum we both knew was starring. She- and the show- were totally amazing. I was so absorbed in it that I didn’t even get tearful (well, not more then a couple of times) despite the beautiful music and often heart-wrenching storyline. Happily there was plenty of humour in it too and some moments where you felt you were at a rock concert: a truly unique show.

The next day, however, Friday 5th, I ended up being a bit of an emotional jelly; I’m not sure why- it certainly wasn’t the election result as I didn’t have room in my head for any feelngs about that. Perhaps it was my inflated tummy, or the impending wedding, or the fact that it was the last day of term and Isaac was essentially finishing Primary school (it didn’t quite feel like it as he is staying on at Heath Mount for Year 7, but I was very aware of the landmark all the same). Or maybe it was the fact that before I went into London I met up with with a wonderful lady called Kate from the ‘Living With Stage 4 Bowel Cancer’ online forum, and it really hit home to me how serious this whole business is. I still look and feel normal a lot of the time so it’s easy to pretend there can’t be too much wrong, whereas Kate has had multiple major surgeries to save her life and put her in what would be considered a better position than me but as a result has no bowel, bladder or pretty much anything else, including hair (Irene has not been quite as kind to her on that front). But Kate was lovely and it was so good to chat with someone who really understands what this crazy game is like- and someone who is constantly fighting for more options.

So Friday morning was difficult, and I was particularly aware of my tender, swollen stomach that was making me look 6 months pregnant. However I was looking forward to meeting my dear friend Jolanta for lunch and a walk, an end-of-term treat for us both. We had a lot of fun and laughter, especially during my dubiously-navigated walk which saw us dodging heavy machinery in a a farmyard. Just before we drove back, I received an email. It was from Nurse Kristine. ‘I will only email you if anything shows up on the blood test,’ Kristine had assured me the day before in London. And here was an email from her. My stomach lurched and I quickly opened it.

I was overcome with relief and happy tears, and it hit me how much I needed that good news. Kristine hadn’t emailed because the results were concerning, but because they were the opposite. It seemed that my tummy issues were more to do with my screwed up digestive system- and in fact things deflated soon after and I’m now less worried about people asking me when the baby is due… Furthermore, Prof had told me yesterday that not everyone’s tumour markers continue to go down at this point, and yet mine had again. I suddenly felt that I could relax and look forward to everything that was coming: an action-packed first week of the holidays leading to THE WEDDING!

But first it was the weekend, and that was anything but quiet. Saturday saw the official finish of the school year with Speech Day, a lovely occasion that rounds everything up and celebrates the Year 8 leavers. As each child came forward to have their ‘scrolls’ read- a description of their personality and achievements during their time at the school- I pictured Isaac standing there in two years’ time; would I be there to watch him? It’s not expected, but ‘with God all things are possible’ (Matthew 19:26).

Sunday was yet another full, crazy day. Church in the morning was held at our house as Steve’s parents were visiting for the weekend. His Dad, Allan, is our pastor/preacher and the services are usually held at their house on the south coast, with us and many people around the world logging in via You Tube. That’s all a bit weird, I hear you muse… We have belonged to a local church with its own building in the past, and for many years, but had to leave when the pastor changed and they church strayed away from that one, full truth that I have written so much about. So we have no big crowds, no social activites, no music groups: but that’s not what a church is about; we are like the early church established after Christ’s coming who met in small groups in houses and simply preached the Word. Nothing else is needed.

Somehow we managed to conjure up and eat a roast dinner in record time and dash off to Isaac’s end-of-year piano concert, which was followed immediately by Lydia’s ‘family-friendly’ Hen do (as opposed to the wild one that took place in Liverpool involving just the bridesmaids and a lot of dancing on tables).

Isaac’s concert was particularly special as it was his final one with wonderful teacher Penny before moving to in-school lessons next term as part of the music scholarship that he has been offered. As we watched Isaac open the concert with a beautiful Einaudi piece and close it with Gershwin’s uplifting Rhapsody in Blue, which Isaac has dreamed of playing for years, I thought back to his first concert, 7 years ago aged just 3, and how far he has come.

There was little time for emotional reflection, however, as we had to get home in time for the Hen party. Boys and men were banished so that us ladies could spend the time cocktail-making and playing wedding-themed games. Somehow I won the cocktail competition with my (non-alchoholic!) creation, and us oldies triumphed over the young set in Prosecco Pong… so much fun and a great prelude to the wedding.

Wednesday 10 July

Later in the summer we will put the brakes on but the happy whirlwind is not about to stop for the next few days: today saw an early birthday celebration for Isaac with 3 of his close friends that will be away for his party in August (aka the house was overrun with boys, Nerf guns and electronic devices).

This evening I drove to Cambridgeshire to see a very special friend for the first time in almost 25 years; Neil and I played in a local wind and brass band together when I was a 6th-former and quickly became close as the average age of the band was pushing 80, plus we were both keen composers. Neil moved out to Hungary not long after that and has been there ever since so our paths have barely crossed even though we have stayed in close touch, but given my situation we were particularly keen to make a meet-up possible when he visited the UK this summer. It was such a special time and the years melted away.

Thursday 11 July

The fun continued today with a trip to London with Isaac in tow for my appointment with the Pain Wizard- I think that name will stick as he was indeed a wizard, or will be if his complex plan to improve my neuropathy works. He did all sorts of strange tests on me: some involving such things as sharp pins and tissues to see what I could feel, and others designed to see if I had lost strength anywhere. I passed the latter test with flying colours and no muscle wastage could be found even though this is apparently expected. Not on my watch, Monsieur Wizard…

I came away with a double sided piece of A4 filled with scrawlings, little pictures and diagrams.

So my ‘kick neuropathy’ summer boot camp looks a bit like this: balance exercises, hand putty therapy, peg board timed tests (ooh, sounds competitive), sessions of acupuncture follwed by training to ‘self-needle’ (hmm), breathing exercises, physio sessions and related exercises. Woo!

After yet another blood test to test for…something or other, Isaac and I headed for a Covent Garden for a quick lunch before visiting The Art of the Brick, an exhibition of sculptures and famous paintings built entirely of Lego bricks. Children often find it hard to appreciate art and connect with it, but it is a different matter when Lego bricks are involved: Isaac was captivated.

Another 10k was racked up pounding the streets of London today: awesome. I’m so thankful to have health (well, apart from the purple elephant in the room) and buckets of energy, allowing me to do things like this with my lovely boy.

Well, I shall leave you at this point; tomorrow will see me quite possibly jumping around the house all day like an over-excited child high on Skittles as we go about the final preparations for Cyprus. Did I mention there’s a wedding?! I have to keep blinking my chemo-damaged eyes to check that I’m awake and this is all real. It felt very significant and most wonderful to cut the tags off the new dresses that have been hanging in my wardrobe since our cancelled holiday to St. Lucia 9 months ago. 9 months!!! I really didn’t think I would ever get to wear them, but now they lie carefully folded in the suitcase, along with our wedding finery.

No hard feelings, Irene, but I’m not going to miss you. Use the break to build your strength up ready for when I get back. And I’ll show you the wedding photos, I promise.

That applies to you too, cherished readers! Next stop, Wedding Issue!

‘Gracious is the Lord, and righteous; yea, our God is merciful. The Lord preserveth the simple: I was brought low, and he helped me. Return unto thy rest, O my soul; for the Lord hath dealt bountifully with thee. For thou hast delivered my soul from death, mine eyes from tears, and my feet from falling. I will walk before the Lord in the land of the living.’ Psalm 116:5-9