A Message From Babette

8th May 2021

Babette Bluett-Duncan

Director

It’s been a while… I wasn’t able to be settled enough to sit down and write. So for the past 5 to 6 weeks I have been experiencing new pains, and that, funnily, took me aback… I had just not prepared myself for pain… I hadn’t put pain in my personal computer…

So, navigating it all has been and still is a learning curve. Caught between the advice of Arcadia, who are holistic and “de pointe” as we say in French, ie Vanguard and rather ahead of “the competition”, and the local oncology department, I was confronted with thoughts like “beggars can’t be choosers” or “one cannot challenge a consultant’s opinion”. So discussions with nurses, back and forth, acceptance of chemotherapy as Arcadia confirmed the drug I was offered, Capecitabine, was a good drug, but he would recommend it at ¼ of the dose that most oncologists tend to prescribe. Hopes that (for a while) that my local oncologist was actually going to prescribe the same dose, hopes that the 2 schools were in harmony, and that I wouldn’t have to feel like piggy in the middle, were then dashed. I was utterly gutted and demoralised when being invited to pick up my prescription and drugs at the chemo suite at my local East Surrey hospital. Arriving there and being confronted with the most infantilising nurse ever (high pitch voice, talked as if I was a 5 year old, not listening to me, and eventually giving me the drug and prescription which showed a dose 4 times higher than I had accepted in my head). All this happened over the course of many weeks.

Then my visible tumours as I call them, a patch of red, inflamed, sensitive area on my chest wall, turned angrier, and 1 of them began to bleed. A bit worrying at first, a bit of a oops moment, but the whole thing is not painful, and is contained by putting dressings on it, and I am not squeamish, so all ok. Then things got better when I was put in touch with St Catherine’s hospice Palliative Care. Another Oops moment at first, talking about a hospice, and about palliative care made me feel catapulted into the realm of being 85 not 61, and about to pack up not to have another year or so… But, past the shock, past the idea, (funny the power of preconception…) the people I spoke to on the phone or met in person are the opposite of the Chemo suite staff, not infantilising, very respectful, calm, in the here and now, and wanting to help me, my way. And above all for me, taking me as a whole, not dismissive of Arcadia and what it means to me and how it helped me, and still helps me. It made me reflect even more on the psychology of the staff of the chemo suite. I remember nearly 3 years ago going to the same suite to get some chemo, and having a weird experience of first being overly welcomed, invited to be getting special treatment by one of nurses (even more so when she had understood that my friend Helen who had accompanied me and I were both psychotherapists!) to then be told off because I was acting in the way she had invited me to act initially… Maybe it is really difficult to work in an area where most of your patients “die on you”… Maybe that is why the staff need to go to a “Happy Place”… I prefer ‘Sad Reality’ to ‘Fake Happy’ myself, but we are all different. And although I do not share these views, it matters to me that I find a positive reason why someone is acting in a way that I find offensive. And to finish, I can say this now because I had time to reflect on the experience, and on strategies to protect myself should I need to go back to the suite, but when it happened, I was offended and taken aback, and that made me cross, and I spoke my mind… I am pretty sure that I am known in that department as a “very difficult patient”.

Anyhow back to my reality of 3 weeks ago now, I went back home with my prescription of 4000mg of the drug, and started to take only 1000mg of it. I am now in a new small battle, where Henning, the Arcadia doctor, is suggesting that I get some low dose radiotherapy together with my low dose chemo, but the oncologist here sees it differently. There is another clinic not far from Arcadia that does radiotherapy together with Heat treatment that I did have when I was there before, it seems very advanced, very vanguard again, I am excited at the thought… So do I think of going back to Germany? I certainly spent all my available income plus some significant donations from my French family members on the last trip. Do I take a new mortgage to fund the new trip? Will someone offer to start a crowdfunding page for this new round? I am not on the breadline so who am I to ask anyone to participate to funding my next treatment? Should I just accept what is locally available?

All these questions have certainly kept me busy in the last few weeks. I am now more settled, have found a new painkiller to deal with new chest pains that have appeared 10 days ago, and Henning is also sending me a new drug which had been trialled in America some years back. It’s the only drug so far that has any effect on the Triple Negative cancer, and there is currently a team in New York who is re-trialling the same drug. So I am looking forward to getting it. In the meantime Andrew has organised stuff in our kitchen/dining room so that I can put some fabrics out, the sewing machine, and even a small ironing board and iron to enable me to be with the family and sew. On that note, for the last 12 or so years, since I learnt to do patchwork, I have regularly made a baby quilt for any child that was born to the extended family members, and to friends and neighbours. And I was always going to make some for my grandchildren… Now there aren’t any of these in the pipeline but it matters not. I am now starting to make a quilt for the future poppets. And unless our children end up with twins, these baby quilts are re-usable from 1 child to the next, (as Rebecca whom I met when she was our rep for Le Creuset and now lives in her native New Zealand was recently reminding me). So this is 1 of the first projects I am putting my slow energies to. Another project/s is that I asked the Universe to send me people I could help, either with my sourdough/bread/cooking cap head on, or my psychotherapist one, and my prayers have been answered with projects where I can say when I feel tired, but that give me great joy as I simply just LOVE passing on any knowledge I have. I am in fact specifically excited to find ways to help anyone individually. I mean to put my brain to What does this person want/need? What is their psychology/barriers to learning? What can I say/find to help them have access to receiving help? I really love doing it, and Andrew very kindly often verbalises that I am good at it. So, yes thank you the Universe for sending me small projects. And I suppose I am putting it out there to you today, if you know of anyone that wants help with bread making, I am happy to do doorstep advice to begin with, and possibly more. And if you know of any good cause/person who wants a bit of help in life coaching/better understanding of oneself, then I am more than happy to do at least the first few sessions free of charge, because it helps me.

So that is where I am at. My lovely husband and 3 young adults are more than ever supportive, and attentive to me and this body of mine which is fighting peacefully the changes in it. I am more settled now having accepted this new place where I don’t do much, and there is something quite relaxing somehow to accept that I will not be cured from this Triple Negative cancer, and yet there is also hope through Arcadia et al that I might last a bit longer around you all… One day at a time, that is all I can do, one day at a time.

As before I love to read any thoughts you want to share, and the emails I receive lift me up and touch me, and give me a wonderful feeling of being a bit useful which I cherish. Just be aware that I do not have a lot of energy, and cannot promise I will answer everyone, and indeed there are about 10 people on my list of un-answered emails.

Wishing you a peaceful day.

Babette

babette@artoflivingcookshop.co.uk

PS: I went to see the oncologist today and we have agreed that I will take twice the dose of chemo. That is still half of what she initially recommended, but twice what I have been doing. If what I have been doing so far has stopped the spread of the metastases, what we are hoping with upping the dose is for the open wounds to cure somehow, for it to stop me needed some dressing on it. So I am at peace with that. I will observe what happens.

But the reason for this PS is that on our return, Andrew and I drove by Horley where there is a Lidl, and we stopped as I had Cognac on my Lidl list. Cognac I use a fair bit in cooking, either to deglaze the pan where I cook bacon and then chicken for my Chicken Caesar Salad (before then adding mayonnaise and grated parmesan); or I put some in when I slow cook pork belly to make rillettes, a French Pulled Pork type pâté which, together with many of you who have lived in France for a while, I am very partial to, but have to make my own as they haven’t yet crossed the channel; or as an addition to the pan when I roast a chicken; or finally as a final “liaison” or thickener for any casserole that lacks umff, by mixing some cornflour in cognac and adding it slowly to the casserole after it is cooked. so Cognac, I use a lot of. And call me cheap, or call me ingenuous, but the cheap cognac does the trick for me in cooking and so I was delighted when I found out that Lidl sells some. Today the bottle was just over £10, I can justify Cognac usage on an weekly basis at that price.

But also today, Lidl was selling Dry Porcini Mushrooms. At £1.69 for 30g, ie just over £55 a kilo it is a steal, but above all, I opened the pack as soon as I was back home, and the mushrooms in there, unlike some other packets from some other suppliers I tried over the years, are all proper Porcini -or Ceps as we call them in France-, and also some decent size bits, like when I dry my own, not the bits that look like sweepings in some other makes. For those of you who are not so familiar with Porcini, the King of the Forest as some call it, the reason for their fame is that on drying, Porcini develop a level of aroma and scent which is very potent and extremely palatably umami in cooking. Use them either as they come, ie re-hydrate them in boiling water, let them soak a bit, then either as, or cut up small, use in any risotto, together with the precious liquid. You can also blitz the dried mushrooms into a powder which you then add very easily to any dish without needing to pre-soak. I highly recommend having some dried Porcini in your larder. I usually forage mine, ie hardly ever buy any, but at that price, and good quality, I bought 3 packs myself, and thought to pass on the tip. If that appeals to you, run to your nearest Lidl because it is part of their “one off” promotions. The cognac is there all year round.

Happy cooking!

Babette