13 May 2024 (7 month cancerversary)

‘For the Lord is good; his mercy is everlasting; and his truth endureth to all generations.’ Psalm 100:5

So finally the rollercoaster is chugging along on a high, straight track more like a train, and I am enjoying the ride… we have been on Cloud 9 since Thursday, with Steve describing the feeling as ‘just like our wedding day’ 😁.

We feel that we have been given a reprieve, some respite, some breathing space. And most of all, we have been given the gift of time, which when you are in my position becomes the most important thing. It was wonderful to receive a treatment schedule on Friday which details chemo sessions right up to August. Of course nothing is guaranteed and we live each day by faith, but we are comforted and encouraged.

I was so touched and overwhelmed by the outpouring of messages and comments on the blog; apologies to those that I haven’t yet been able to reply to personally. It was the most wonderful thing to know that friends from Knebworth to Dorset to Transylvania (yes) and further afield around the world were rejoicing with us. And maybe raising a glass of bubbly with us too…

Of course I still have extensive and very serious cancer, which on paper is considered incurable, but the wonderful thing about SuperProf is that he never talks about that. He focuses on what he can do in the here and now to achieve the best possible outcome, and his attitude is always true to what he told us at our first meeting: ‘We keep an open mind’.

Our psychological Cloud 9 was nicely matched by another trip to actual Cloud 9- and what a weekend for it! Saturday was the warmest beach day yet this year: it was time to get the paddleboard out. Not sure if many people jump on a paddleboard after 11 cycles of heavy chemo (Nurse Kristine was seriously impressed when I told her) but I loved it and was even able to stand up and paddle despite the wavy sea (unlike Steve, who didn’t manage to get off his knees. Just saying.)

We had travelled to Dorset for a second weekend in a row for a particular reason: a family that is very special to us who we haven’t seen in years were visiting from the US and staying with Steve’s parents. It was wonderful to see Rick, Janine and Rebecca and the years melted away instantly.

Of course they particularly wanted to see us because of my situation. Saying goodbye knowing that we may never see each other again was so very hard, and it made me realise that there will be lots of goodbyes like that. But so there will for all of us, and no-one can really know when it will be the last time, so best to smile and be thankful for the present instead.

I felt quite unwell when we got back to Knebworth on Sunday evening. I was exhausted, my tummy hurt and I felt nauseous. Was this the beginning of the rollercoaster’s descent, so very soon? The answer happily seems to be no, as Isaac awoke unwell with a virus this morning and it seems that I have a touch of the same thing. Terrible timing for Isaac as it’s the first day of his exam week; hopefully we can both shake it off in time for school and chemo tomorrow. I do not intend to miss my next meeting with Irene the Wonder Drug.

Irene is of course in my good books but one of the other drugs is not. Oxaliplatin is a drug that can usually only be given short term: I have done well to be on it for six months despite Count Onc constantly reminding me in the early days that I would soon have signs of neuropathy that would mean the drug has to be stopped. SuperProf made no such assertion, but did say that I had to let him know if I started to experience any numbness or tingling in my hands and feet. Yesterday, as I played the piano in church, I couldn’t feel the tips of my fingers, and this was soon followed by a similar feeling in my toes (don’t mind that so much, I don’t often play the piano with my feet). So I have reluctantly had to email Nurse Kristine to inform her in case she want to pass on the info to Superprof. She will. I hope that he doesn’t want to cut the drug entirely at this point. I am reminded that despite our wonderful news, nothing is straightforward. We can only look up to Christ and trust in Him for everything.

So Isaac and I are snuggled on the sofa under blankets; not the day either of us was hoping for (I was so looking forward to a sauna, swim and lunch with Marvellous Monday Judy…); but if I have learnt anything from this it is to embrace what I have instead of what I might have had. Isaac and I will have special quiet time together, and the busy madness and fun will return soon enough.

Talking about Isaac, now is the time to tell his story. Buckle your seatbelts: back to 2011 we go…

Ah, those early post-MA days… no dissertation to write, no deadlines, no frantic editing of scores at 4 a.m, no interrogations by slightly scary tutors and even scarier conductors. And with three children now at secondary school and out of the house for longer hours, everything was suddenly easier. It was still a mad juggle of course, with 25 or so pupils coming to the house plus a growing number of peri pupils at St Joes in addition to my class teaching and ensemble directing. But there were also quiet times. Very quiet. And I didn’t like it. In those pre-Covid days when working from home was almost unheard of, Steve was often out of the house for as long as 15 hours and it was the norm for us to eat dinner at 9 or even 10 pm. When I wasn’t teaching and the children were out at activities or holed up in their rooms chatting to friends, I felt lonely. And at weekends Steve and I often found ourselves at a loose end, going for walks together when the children were out, but not quite fitting in with the other couples that were doing the same thing at twenty or thirty years older… ‘Help!’ My inner voice screamed. ‘I don’t want to act like a retired person! I’m 37! I like slides and hide and seek!’

This was just a general feeling, though, and one that I pushed out of my head. A clearer message, though, soon appeared, and totally floored me… I was sat playing the piano in church one Sunday and happened to look across to the row where my family was sat: Steve, Michael, Lydia and Ariane. There was an empty chair on the end of the row, and it suddenly hit me out of nowhere: BOOM. Someone was missing. I had never been so sure of anything in my life. It was obvious. There was supposed to be a fourth child. I had no idea previously that our family puzzle wasn’t complete, but once I had seen the hole where the last piece should be, I couldn’t unsee it.

This was actually a problem. Even if Steve could understand and sympathise with my feelings, he would point out the small matter of his having had a certain minor operation back in 2000 when he was not even 28 and Ariane was still a tiny baby. ‘Are you sure?’ the nurses had asked us repeatedly, concerned looks on their faces. Yes, we were sure. We were happy and fulfilled with our three gorgeous children, but also run ragged and felt that another child would send us over the edge: given our track record another would be pretty much guaranteed unless we took drastic action.

I thus kept my feelings to myself for a few months, but they only grew stronger and stronger. One tearful night, I finally found the courage to share things with Steve. His reaction was exactly as expected:

‘I understand how you are feeling,’ he told me gently, but with a matter-of-fact edge, ‘But of course it is impossible.’

I had been googling, however, and knew that it wasn’t completely impossible. There were doctors who specialised in this sort of thing, with reasonable success rates. Steve must have been horrified when I relayed that information, but managed to calmly advise: ‘Let’s leave it a while and see if the feelings go away.’

They did not go away of course, but I threw myself into other pursuits. That Christmas, a cantata that I had written for Knebworth School a few years back, Grandad’s Story, was to be performed by new forces: professional bass soloist, instrumental ensemble, Knebworth Community Chorus and Knebworth Youth Choir. I worked hard on the revisions and rehearsals were going well. Furthermore, I had met the well-known composer/conductor/music publisher Douglas Coombes at a conference earlier that year and he had taken a great interest in my writing: after a session at his house looking through my piles of choral compostions he declared that he would like to attend the performance of Grandad’s Story with a view to publishing it. This was hugely exciting, and opened my eyes to a new possible future. I made a deal with myself.

‘If he wants to publish it then that is my way forward; I will become a composer of educational choral works,’ I told myself. ‘And if he doesn’t… then I will have a baby.’

Coombes and his co-publisher (who happens to be his wife) declared Grandad’s Story ‘most charming’, but it clearly didn’t fit into their publishing catalogue and wasn’t signed. Let’s just say that it turned out to be the best rejection in history…

It was time to seriously pursue Operation Have Baby Even Though Nearly Past It. I presented Steve with a handwritten list of ‘Fors’ and ‘Againsts’. The ‘Against’ side was almost empty of course, I was not attempting to provide a balanced argument. Steve was almost persuaded. ‘You know I’m a softie at heart,’ he admitted. ‘And I can see myself with a newborn lying in the crook of my arm… I did always love that.. But the answer is still no. We couldn’t take a baby skiing and I wouldn’t want to give that up.’

What? It was to come down to skiing?!! We only went once a year… And of course we could take a baby skiing. I threw Steve promises of creches/nannies/anything. He was appeased.

So there were now no obstacles remaining, apart from the colossal obvious one of course. I shared my copious research with Steve, all of which pointed to a Nottingham clinic and a particular surgeon. The potential success rate would be lower due to the number of years that had passed since the initial deed, but this guy had an impressive track record. The SuperProf of.. well… you know…

Still, it seemed like too big and crazy a thing to actually commit to. For Steve, that is. I was more than ready to sign him up! We waited longer.

The final decision was made in the grounds of Knebworth House one Sunday in March 2012. It was Village Open Day/Peasants Day again, and we had gone along to it with almost-12-year-old Ariane. She disappeared after about ten seconds, having spotted a group of her friends. So Steve and I walked around the beautiful gardens together chatting but feeling somewhat emotional, and then sat on a bench overlooking the house itself, its gothic towers managing to look pretty in the spring sunshine. A family passed us pushing a toddler on a trike. Steve looked wisftul.

‘It would be nice, wouldn’t it?’ He smiled. ‘I can imagine us with that toddler, with that trike…’

I was so happy I could have burst.

‘Shall we go for it, then?’ I asked Steve through joyful tears. ‘Will you really do that for me, for us?’

Yes, he would. It had to be an entirely covert operation (get the pun?!). We invented an imaginary business trip for Steve in Nottingham and I would go with him for a ‘mini-break’. We sorted sleepovers for the girls; Michael at age 16 was delighted to be having his first experience of staying home alone overnight. Little did he know that we granted him that out of necessity: he had outgrown the sleepover phase and we didn’t want to ask our parents to help out in case they smelt a rat…

Cue dramatic yet mysterious music… the credits are rolling… Part 2 of this story will be broadcast from the hospital tomorrow if you can wait that long (too bad if you can’t..); this post has been long enough and I need to focus on the present Isaac for the rest of today…

Ooh, one more thing before I go: I’ve just heard back from Nurse Kristine re my tingling extremities…It seems that I should have had more faith in the LOC’s ‘glass half full’ approach.

‘Yes, that will be neuropathy from the Oxaliplatin,’ Kristine casually confirmed in her email. ‘But we don’t change anything if it’s not affecting your normal activities.’

Well, playing the piano is a normal activity for me, but I’ve already proved that I can play with numb fingers so all is good. Oxaliplatin shall be joining the cocktail party tomorrow. Woo! 💃🏻🍸

‘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.’ Psalm 116:7-8