Days 310 – 311


It’s chemo day the early train from Pz to Truro.  But in the morning I’m in the office with Caz as Dr Kruger is on some training thing.  Caz has had a long email from me detailing my concerns and questions and is she nervous?  I’m not sure, I know I’m a bit nervous.

But we talk carefully and clearly through all the points; the ENT surgeon missing it (although I realise afterwards there was no conclusion as to how to ensure the information is passed on), the stage IV prognosis vs. stage I and that being probably why I’m here running up to Stem Cell Transplant.  Obviously Stage IV is harder to deal with as its more entrenched.  And most people going on to SCT have ‘refractory’ cancers like mine that are resistant early on in the treatment.  So we are where we are.

We also discuss the SCT procedure in more detail and there is some clarity emerging.  Reading the Lymphoma Association literature suggest a straight line from the beginning of second line chemotherapy to SCT but it’s nothing like that.  The PET/CT scan results in three weeks time are important in that they will determine whether the cancer is in remission enough for me to proceed.  If it’s not there are choices of higher doses or other types of chemo that might be tried. They tend to reduce the effectiveness of the stem cell harvesting though so there might be a decision to harvest  my cells before embarking on a more aggressive chemo.

Then there is the search for a donor. My brothers are being tissue typed to see if there is a close match.  The chances of finding at match in the global stem cell bank is slim I think, so siblings remain the best bet.

Then there is clarity about how Cornwall deals with SCT patients. If I have autologous SCT and receive my own stem cells back then I would receive them at Derriford Hospital and come back to Treliske for the aftercare.  If I have allogenic SCT and receive donor cells from someone else then because of the greater risks of graft verses host disease then I would remain in the hospital where the transplant took place. The nearest hospital is Derriford, and the period of hospitalisation can vary considerably depending on my recover process.

This leads to a discussion about which hospital then, if I receive donor cells.  It’s not so much to do with relative performance of the SCT units.  One might assume that a unit that sees 100 patients as opposed to 10 a year might be more experienced, however all are accredited to a regulating body.  The main issue for me is proximity to my own support network.  I’m making preparations in Penzance for Treliske, being only 40 minutes away, but Derriford is a good 2 hours off so not great.  It is also 45 minutes from Mum and Dad but I don’t want them to shoulder that responsibility, much as they might want to.  The best option for me would be London as I have friends there who are already helping and planning to come down the Penzance to help out after I return home, and I know they will be there for me if I end up in London for the transplant and the period of aftercare when I have to be either in the hospital or in serviced accommodation near the hospital.

Anyway, nothing is yet decided but it’s good to know what the options are so that I can begin to plan either way.  The team at Treliske would make the necessary referrals if I wished to go London for the allogenic transplant, and it seems that choosing not to go to Derriford would not be a problem.

After this productive clinic session I’m over the Headland Unit for my chemo but there are too many patients and the hours go by with various people making an undignified noise about having to wait so long.

I head over to the restaurant which is actually very relaxing, light and spacious and mostly used by staff.  In fact Dr Kruger comes over and ha a chat about things and the meeting with Caz, which was good of him.

I sit tight and enjoy reading the cookbook Diana has given me and which chimes so well with the dietary advice from the nutritionist.  I could eat almost everything in that book, with a few adjustments because of cutting out honey and maple syrup.  But wow, if that’s optimum nutrition bring it on!  My two cooks can help with this and I think are already on wavelength.  It’s going to be educational and inspirational.

Here’s a link to the cookbook and the clever Hemsley sisters who have put together in one book a new strictly organic version of a lot of traditional techniques – a sometimes frugal approach, once you’ve bought all the toys for the kitchen (juicer, blender, dehydrator and spirolizor!) your organic veg and occasional meat and fish, to making bone broths, soaking nuts seeds and pulses to ‘activate’ them, dehydrating them for crunch and storage, fermenting, storing, batch cooking, and some more newfangled ways to boost nutrition by juicing and making vegetable smoothies.  Yes I know, you will have to skim over the first 10 pages and the posed photographs of the sisters looking just too perfectly happy and healthy (they can’t help it), but they’ve done a great job – the principles are sound and the food looks wonderful .  I can eat that.

Perhaps as a result of not making a fuss with the receptionist I don’t get called until 4pm and then after having a bag of saline dripped into me there is a hitch and the nice nurse says she’s sorry but they can’t complete the chemo today it will take too long and can I come back tomorrow? Actually I really don’t mind. I’ve had a good day finding out about what’s coming and reading and thinking food, and I’m exhausted before they even start.  It will be better to begin fresh tomorrow.

So that’s what I’m doing now – back on the train again to Treliske for a morning session.  I’ve got my cookbook to finish and Alison has kindly volunteered to pick me up at lunchtime as the cafe is closed today and she can leave her crew preparing food for the cafe tomorrow.

Diana is in touch and fielding the various supplements and the wheatgrass deliveries due to arrive today but of course I’m not at home to receive them. Thank you D.

The day passes and the steroids kick in and I’m speeding again.  No sleep for me tonight, but on we go.  I’m doing well.