Day 309


Ok a quick update.

No let-up in the busyness as yet. There always more to sort out.  I’m not writing from bed in the middle of the night but from the train heading to Treliske for a day of kidney tests. I’ve been up since 5am catching up with a few emails, sorting out an order for a blender for smoothie making (on the recommendation of the nutritionist) and hoping to return the Omega juicer I bought three weeks back which isn’t man enough for the job and buy something more robust.  Thanks to Roman and Diana for all the research…

Also emailing my GP to begin the referral procedure having found, with the help of EP and KW, a London onco-haematologist consultant that I’d like to have on board if he will take me as an NHS patient.  This is the outcome of all the worries of my own and others and what I’m looking for of course is reassurance that all is well and that I can relax into having the SCT procedure here in Cornwall.  But there’s more to it as well.  The consultant I’ve found is a Hodgkins Lymphoma specialist and appears to be totally up to speed with the latest developments and trials of new drugs etc.  If the cancer returns after the Stem Cell Transplant then I will need him, and it would be good if I was already on his radar.

What else already this morning as I trundle towards Truro at 7.40am?  Well the meeting with the cancer nutritionist Liz Butler was very good and very worthwhile.  There are some tweaks to my diet mainly in terms of cutting right down on carbohydrates that might convert to glucose and feed the cancer, so pushing my sugar-free approach even further. Yes, so grain and gluten free.  Also an emphasis on bone broths and smoothies, used as meal substitutes at times, packed with easy digested and absorbed nutrients. And a respectable but manageable programme of supplements which Diana is managing for me, thank you D!

The nutritionist’s approach seems sound and flexible too – we discussed the three phases of treatment with their different requirements and she has good suggestions for all, and understands what I aim to achieve on returning home after the transplant – a rapid rebuild of my strength and immune system and a careful switch to the most actively ant-cancer and detox diet that I can safely manage in order to boost my new immune system as it battles with any remaining cancer cells should there be any left.

And to help with all the dietary stuff I have Alexandra and Kate coming to do the cooking, starting today.  Hooray!  Preparing supper and helping with shopping and making sure I know what I’m doing for breakfast and lunch each day.  This will be a terrific help.  I’ve been doing my best but it’s a struggle and what I really need is some space and time to stop and begin to relax into what’s coming.

This is the same cry for all things. It’s a stupid but I can’t help feeling like I’m failing on all fronts most of the time; diet, exercise, mindfulness, inner calm, sleep.  And then more mundane matters like house cleaning, washing clothes and looking after myself.  It’s not really true but that’s how it feels.  It must be to do with the underlying helplessness; the cancer growing, the chemicals fighting, the weakening frame, and occasionally the fear.  Anyway yes, get someone to come and clean too.

I’m trying to keep calm.  Stacey came to visit and talked inspiringly about some simple meditation techniques and Sabrina emails about breathing techniques.  I look into 4-7-8 breathing to calm the heart and steady the breath – a girl writes in the Guardian about how it so works for her, stressed out as she is about her friends forthcoming wedding where she has to make a speech and presto! she a falls into a deep untroubled sleep after one breath.  Gorgeous isn’t it?  I tried it at 4am last night – I tried carefully and moved the dark thoughts aside concentrating on counting and the feel of my breath. No sleep came.  But maybe my breath deepened – I’d woken disturbed and panting from a dream about something close to life – and although I didn’t sleep I did decide to get up, accepting my 6 good hours of sleep with grace and now here I am.  It’s been a good morning. I’ll persevere with the breathing. Just keep breathing…

What else?  I’m happy to report that Caz’s washing advice has healed the lesions – I won’t go into any more detail don’t worry.

What else?  I’m putting down 6 metres of 30mm thick jigsaw exercise mats on the floor of the studio to give me a space for the Pilates outside of my cold-weather quarters (my bedroom), and some insulation from the cold and some spring in the step.  The big red and black alternating squares look fun, and that room heats up quickly so will be nice to stretch out in.  Rope jumping disappointment though as my right knee complains so quickly so I need to ease up on that. Gently does it old man, gently does It.

While I’m about it I’m going to move my computer out of the bedroom too – again in there because the room is easy to heat and I like the view from the window across the bay, but it’s presence there isn’t helping me relax or sleep, so time to crank up the heating in the main space and create a place of tranquility where I sleep and will perhaps finally start to stop, and start to breathe and quiet that noisy mind.

What else?  The building works are progressing on the house with Marcin and Richard B doing terrific work. Still aiming to have it done by the end of the month.  Meanwhile I hope the solicitors are talking and progressing the sale…

What else?  I stopped in at Plymouth on the way back from London and the nutritionist meeting to have a final look at Beth Eliza, the Saga 40 yacht I’ve been thinking about.
The guy at the marina took off the stove flue so we could check the teak deck plank thickness. There’s certainly enough to take a heavy sanding but the caulk grooves are quite shallow so there’s more to research on how to rout those out deeper and cleanly. I don’t know. I think I’ve got as far as I can with this boat. Unless the price came well down there’s just too much to do.  I think going to Scotland to view the one up there is the next step.  Whatever, it’s a nice distraction from treatment etc thinking about these boats…  No rush.

The kidney test – five hours of injections and waiting and blood letting.  The nurse is calm and friendly and it all goes quickly.  The results will be with Dr Kruger for tomorrow’s meeting before the next round of chemo.