Breaking radio silence - 18 August 2018

Some loyal and perceptive readers noticed that I hadn’t blogged since I had my surgery. As this means that I had more unreplied texts to feel guilty about, it was high time I got back to it. For those of you who like time to flow in one direction, and feel perplexed, I'm sorry, even more time went by and I actually broke the radio silence with the annoying news about liver function. This is the post that should have gone first (and might indeed be followed by one that should have come before this...get the time machines out everyone).

Why was there a long gap? Well – I did start writing about the surgery and the escape from hospital, but was unwilling to publish as it was a bit boring. I may still inflict those passages on you.

Why else? a string of reasons.

Certainly, it’s been a tiring business, convalescing. There was a lot of sofa, which transmuted into a lot of garden rocker, and a lot of daytime sleeping. There was a lot of drug taking (including 28 nights of self-injection - uggh) and a high level of associated recording of whether the right drugs had been taken at the right time. There was also a lot of end-of-day collapse, cunningly disguised as a new interest in football. TBH the World Cup was quite interesting, and positively exciting at moments. It all started with a match that screened on the evening of my discharge when I was absolutely delighted to sink into the sofa when I got home. In Maddy’s absence I then picked up the football-administrator job of filling in the chart delivered by our local estate agent so we all had a non-screen reference to who got how many goals and who would be playing in the next matches etc. And most surprisingly, I even found myself watching some matches alone, except for  my constant companions - compression stockings!!

For significant periods, it has simply been too hot to sit at a keyboard typing.

Luke has been home which is a bit of a nil sum matter – he helps a bit but also creates a degree of chaos which I sometimes felt the urge to clear up. Not always, I know that a significant input is required to keep entropy at bay and my own mess is bad enough. 

And it wasn’t very long before I was to be back on the chemo treadmill – 2 weeks post-surgery - with public transport travel a challenge for someone who was still walking stooped over and wearing clothes that didn't rub on the sewn up/glued up wound too badly. Not to mention the feared possibility of coughing/sneezing/laughing/hiccupping which required the carrying of a nice firm cushion or folded fleece to press into my belly, just in case ….  I had the certain feeling that without it my insides would end up on the outside. But TfL did come up trumps again. I applied for a ‘please offer me a seat’ badge and card – online, no questions asked – and they arrived the day after I'd applied - shown here with my Macmillan and Bladder and Bowel Community toilet cards...

And tube passengers have also come up trumps – on the two occasions I’ve been on crowded trains, someone has given up their seat for me. And I've taken the other cards in to cafes but not really  needed them.

To continue with the excuses, I’ve also been dealing with mum’s affairs. We organized a small funeral, just squeaking in before the surgery.

We are now thinking about a more celebratory event, to be held on 16 September. Today I've been looking for tea urn hire in the Lancing area. You'll be glad to know that there are a number of suppliers... and there's been other stuff to organise – bank accounts, bills and Wills, solicitors, probate, returning care equipment, clearing up and starting to clear the house sheds and garden preparatory to selling the house.

Significantly, there’s also a sense of being on the edge of another phase of this life experience. The first phase was a very anxious time, ‘waiting for a diagnosis’ and then getting it. The second phase was taken up with treatment which certainly gives you lots to do and lots to learn about and be engaged with. The third phase came shortly pre-surgery, when I could hardly believe I'd make it through and was preparing to die under anaesthetic in a fatalistic and paralysed way. Phase 4, having survived the knife with a huge sense of relief and being in rather better shape than I had feared (I do not have a stoma !!!!) there’s a pretty brutal return to chemo two weeks after the surgery. I’m now peering forward to Phase 5 - the end of chemo proper and the start of a one-year three-weekly Avastin schedule and the monitoring phase. I’m pretty sure this is going to bring a resurgence of anxiety as to whether the damn thing is going to recur, and the stats put this as a likely although not certain thing. On the very very plus side, I’m looking forward to feeling much better once my WBCs etc have resurged and I can take all sorts of risks wrt infection – crowded cinemas and theatres, swimming,

I’m already starting to rebuild my stamina as best I can, filling in my Macmillan activity chart with three main goals - yoga (v gentle) as many days per week as I can manage, increasing number of brisk strides per walk (up to 600) and getting on the bike and trying to go a bit further as often as poss (not so good on this one).

And I've signed up for the HOPE course which runs when the first tranche of treatment ends - Help Overcome Problems Effectively - developed by Coventry University and delivered by Macmillan, it covers how to deal with fatigue, setting goals, managing stress and mindfulness - we shall see.