8 March 2024

‘When thro’ fiery trials thy pathway shall lie, My grace all sufficient shall be thy supply; The flame shall not hurt thee, I only design thy dross to consume, and thy gold to refine.’ John Rippon, 1787

It was ‘Bring your wife to work’ day yesterday at BNP Paribas. I don’t think anyone else got the memo as there weren’t any other wives sat on a comfy sofa next to their husband’s desk, toying with the idea of working on the laptop but enjoying much more the window into office life…

Of course I was really there because of our appointment at the LOC with SuperProf; Steve’s Marylebone office was within walking distance of Harley Street so I travelled in to meet him and one of his lovely colleagues for lunch, and then chilled in his office until it was time to go to the appointment. I was made so very welcome and it was great to meet and chat with several more of Steve’s colleagues, who are all following the blog. Thank you so much, guys!

Although we were excited to be going to the LOC as we had heard so many wonderful things about it, we also had a slight feeling of dread: would this be yet another difficult and negative appointment?

It was happily as pleasant and easy as possible given the circumstances: SuperProf was everything we hoped he would be and more. Smiley and approachable from the start, impressively thorough with everything (he had clearly done his homework re my case) and showing a thoughtful, scientific approach. He gave us so much more detail than we had been previously told; it wasn’t easy to hear, but necessary. Count Onc hadn’t bothered to mention that I have a rare genetic mutation called NRAS (this is not inherited but something that develops in about 2 percent of cases) and that my ovarian tumour is also a rare kind called a Krukenberg tumour. My heart sank. I knew from my research that both can limit treatment options and make things more difficult. He added that the mixed response I have had to chemo is also unusual – it usually works or it doesn’t but mine was very selective about what it decided to heal. I was beginning to feel quite special, in a way that no-one ever wants to feel. My case is even more complex than we thought. It was tough to hear that the first line of chemo was considered to have failed, even though we knew it already. SuperProf outlined his plan for the second line.

‘I want to go in with the big guns’ he informed us. ‘I think you are young and strong enough to take it’. Not scary at all then… should I be triathlon training for this?

Instead of substituting one drug for another, as Onc proposed, Prof wants to keep the original chemo cocktail, making the excellent point that it did some very good things, and will add the new drug, Irinotecan, on top. That’s the cheeky little bugger that is probably going to set the execution date for my hair. However we did all manage a laugh about the chance to get a better do than I currently have…’They can match your hair colour’, my lovely new nurse, Kristine, informed me. ‘No thanks,’ I replied. ‘I shall be opting for less grey and more glamour…’

SuperChemo from SuperProf…There will be a mighty array of side-effects but most of them I will already be used to so what’s a bit of tummy trouble to add to that? Oh and maybe a dramatic rash. And increased risk of infection. And the hair loss. And-

I don’t have any choice. Prof confirmed that without treatment, things would progress very quickly. So I am ready to give this my best (flexes muscles- yes I still have some..)

We don’t ever ask about prognosis- and I think if we had done, SuperProf would not have given one as, unlike the other consultants we have seen, he is happy to admit that he doesn’t know everything.

‘I dont think we are going to get rid of your cancer,’ he gently informed us, ‘but we keep an open mind.’

That’s the way to say it! Not: ‘It cannot be cured’ (very first gynae consultant) or ‘We aren’t trying to cure you, remember’ (Count Onc at practically every appointment). We have found our man.

We are so very mindful of the reality now, and keen to straighten out the loop-the-loops of the roller coaster: we can’t cope with any more big highs and big lows. As unthinkably hard as it is, we are preparing for the worst case scenario and anything else will be a happy bonus. This includes talking to Isaac so he is fully aware of things; it will be utterly heart-wrenching but we hope it will help him to adjust.

Prof has advised me to stop taking most of the drugs from the COC, on the basis that they put strain on my liver and the new chemo will add a lot to that strain. We trust him entirely so will do as he says. A shame I’ve just had £150 worth of drugs delivered due to the doubled prescription. Anyone need any Metformin? Worming medication? We fully believe in all of the alternative stuff we are doing to support things, but only if it will not jeopardise the main treatment. At least the oxygen chamber can stay…

So the waiting game continues; they are going to organise the start of Chemo Series 2 for next week but couldn’t tell us which day yet; it may be nearer the end of the week. I’m having a bit of abdominal pain again which adds to the uncertainty, and neither Steve it I are sleeping very well at the minute so it’s time to try to get on top of that. We agreed beforehand that we would go with whatever timing SuperProf recommends – so no ski trip for me: I shall be staying home for treatment while Steve and Isaac head for the Alps in a couple of weeks. We will make the most of it- Michael plus our lovely friends will be skiing with them, so the boys will be happy, and back in Hertfordshire I shall make the most of time with our big girls. Perhaps a spa day…

However, the waiting is to be filled with more lovely things and lovely people, for which I couldn’t be more thankful. I’m so excited that Bridesmaid Becca is coming up from Brighton today; I hope I can manage a walk but at the very least a lot of laughs. We will have a houseful all weekend which is the way I like it: my awesome brother James and family are coming tomorrow, and we will have 3 out of 4 children plus one grandchild with us for Mothers’ Day on Sunday, the eldest/ski freak having taken himself off to the Alps for a month. Mothers’ Day will of course be particularly special this year. I wish we could be in two places at once, in Hertfordshire with our children and Dorset with our own Mums, but chemo permitting we will make it down there next weekend.

Onward we go, remembering constantly that however difficult everything seems, it is but a ‘light affliction’ in the eternal scheme of things and we will be given the strength we need to both cope and be happy. Have a great weekend, all!

‘For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal.’ 2 Corinthians 4:17-18