Rob's Health Updates

Met with one of the HPB surgical team and with the clinical nurse specialist at Derriford Hospital. In a way, don’t know much more now than we did before the meeting. The tumour, which is in the ampulla, is very probably malignant but there is at present no evidence that it has spread. The doctors won’t know the stage and extent of the cancer until they have taken all the tissue out and examined it after the operation. I may or may not have chemotherapy after the op.

I don’t yet have a date for the operation. It may be that I have to wait up to 31 days, due to NHS bed shortages, but I may know the operation date by the end of next week.

The op is called a Whipple, and it is long and complicated (like my Dharma talks ). And it will apparently take quite some months to recover from the op, even if all goes well.

Thank you for all your beautiful and touching well-wishes.
Love,
Rob

Some of us have been sitting with the Gaia House sangha at 8:45 each night (UK time, so 19.45 UTC) to bring Rob into our thoughts and prayers, and to feel connected with the wider weave of support that we give to each other in a way which goes beyond words. Do join us each night if you wish, in the knowledge that there are many dear hearts, dear beings, sitting with you at the same time who are wishing well for Rob.

Each Sunday at the same time, (or Monday morning in Australasia! Sunday lunchtime California etc), either on your own, with your sangha, or as groups wherever you are on this earth, let’s do the same. But when you have finished sitting or offering prayers on the Sunday, do post below any reflections from the shared practice as an additional weekly way of connecting with each other.

Writing this I have an immediate sense of the immense amount of love and kindness and beautiful intention in this shared field for Rob. Let’s rest in this, cultivate this and offer it for his well-being, his healing and that he may receive everything that he needs.

With love,
Catherine McGee (from Gaia House)

Just a quick note to say the operation went very smoothly and took the normal time. No complications. Great news! Thank you to everyone for holding Rob in their hearts today. We’ll post more soon.

11.30am: I am writing to let you know that Rob is now in theatre undergoing his surgery with Mr Aroori (the surgeon) and a team of about 7 skilled and kind people (we met 4 of them!). He was not expecting to get a date so soon.

Quite unexpectedly Rob was called last night to be on standby for surgery this morning. This is because Mr Aroori likes to have a backup patient ready in case the patient booked can’t go ahead for some reason. And about 30 minutes ago Rob was given his gown and surgery socks and I wished him well as he was taken in for the anaesthetic.

He was in good spirits and had had the chance to contemplate this possible sudden change in events this morning when he came in for 7am.

So let’s beam all our love to Mr Aroori (Rob really enjoyed meeting him this morning) and his team, and to dear Rob. The anaesthetist told him, “You will never have been so cared for in your life! We will follow every breath and every heartbeat for the six or so hours of the surgery!” Bless these dear souls for what they do – may their hands be guided, their hearts be steady and may their goodness and skill be of great benefit to our dear friend and teacher. I will go to the chapel now and sit for some time. Do join any of us during these next hours and the coming days holding Rob in our collective hearts. (I’m going dancing all day.. generate that love in whichever way you please! – Mark)

Mark and I will try to give an update if we can tonight.

Much love,
Catherine McGee

… and it just happens to be Rob’s 50th today! Thank you to Susy for this wonderful depiction of a rather interesting imaginal party Get well soon Rob…

Thank you to everyone for all your messages of support and your birthday wishes. As would be expected Rob was very weak and tired yesterday (though I think he was still a little miffed at this!) but was given a sense of all the love and care that was being expressed on the website and was really very touched. He’s now just quietly being allowed to regain his energy.

Nothing more is known at this stage about the nature of the cancer, we’ll have to wait for test results on the removed tumour before any news on that. But in terms of how he is physically and how he’s feeling, it’s all as it should be, no complications or surprises. He is also being quite fastidious with the exercises the doctors have given him – so much so it appears the rest of the ward are being inspired to do theirs too!

We’ll keep you updated as anything more reveals itself.
Lots of love

A few people have naturally inquired about visiting Rob this week whilst he’s in hospital so we thought it might be good just to say something about that on here. While the operation itself was a success, a Whipple procedure involves a critical period after the surgery where the patient is closely monitored due to the risk of complications. At present Rob is navigating that terrain and therefore isn’t yet ready for visitors. Right now he just needs as much rest as he can get. He is receiving your messages and well-wishes and said last night how deeply touched and grateful he was for all the kindness, love, generosity and words of support shown by everyone on the website.

So thank you for your understanding in this

Dear everyone, wanted to let you know that today the last of the tubes, iv’s, catheters, drains, drips, and lines has been removed.

I have begun eating with my new digestive system, but have to take it very slowly and gently. Hopefully my digestion will gradually gain a little more capacity, but it may be something I just have to get used to. Blood tests and observations look like they are on their way to returning to normal.

Until now your messages have had to be relayed to me, but tonight I was able to look at quite a few myself for the first time. I feel so deeply moved by all the beauty and love in the Sangha, and I really feel it pouring in to my body and being. While I am still physically low energy I am sure that it is through the Sangha’s heart of love that I feel such a great sense of blessedness right now. I am truly truly grateful.

Energy levels are very up and down at present, but here is a photo from a light moment in hospital earlier today.

Love, Rob

Rob came out of hospital last week and is staying with me for a few days before moving to a place he will be renting for his recovery.

We are recognising very quickly that recovery from this operation is not a linear process. Dear Rob is learning how to read and manage many different factors with his new digestive system, and it has not been easy in the time since that beautiful photo of him in hospital. Finding ways to be comfortable (for a while), handling the exhaustion, the right medication to manage pain that he doesn’t react to, and the if/how/what/when of eating is extremely delicate. Those of us taking care of him are fast becoming more knowledgeable about the bio-chemistry of this new anatomy. Recovery in terms of nutrition is a long road for most people after a Whipple anyway, but as many of you know Rob already had a sensitive gut, so it is quite expected that it will take a while to learn what works.

The doctor yesterday said that this was now a time of experimenting, and I said to Rob that that should be ‘right up his street’ knowing how much he can love and apply himself to experimenting! He smiled wryly. I don’t imagine it looks quite like a great adventure when one is weak and uncomfortable, but experimenting we have to do nonetheless.

So far there have been no major complications. Long may it continue.

Please keep your love and prayers coming his way. There has been much blessing and love in amongst this difficulty too, from the knowledge of this large circle of dear beings who care deeply, to being able to call upon dharma friends and loved ones for particular skills or knowledge they have day by day and in the generous offerings you have made to support Rob.

I resonated with Mark’s comment ‘so appreciative of our shared practice’ that he wrote after sitting in meditation with all of us in his heart the other day. That is what I am with right now, that this is a shared practice, wherever we happen to be on the planet, near or far from this particular location. I feel very touched to consider it in this way right now – my body breathes out deeply and my heart relaxes.

9am. I just went upstairs to check on Rob. He is asleep. Alleluia! I wish him a deeply restorative sleep.

Much love,
Catherine McGee

The weeks since being discharged from the hospital have been pretty challenging physically in ways that I hadn’t anticipated. It seems that the post-operative recovery of the digestive capacities when there is a history of Crohn’s disease is trickier and takes longer than it otherwise might. It has been difficult finding foods that stay down or in for long. I have lost quite a bit of weight but I am also told this is normal and should hopefully stabilise about six weeks after surgery. The last couple of days, though, have been more promising and I have been able to eat a little more and have more energy, so perhaps a corner is being turned?

I am being wonderfully looked after by a small team of friends and Sangha folk, and am also receiving very generous long distance advice from a Gaia House yogi in Buenos Aires – a medical researcher/nutritionist with experience working with post-Whipple patients whose digestive systems are struggling (Thank you, Cris! ).

This morning I spoke with the Oncology Clinical Nurse Specialist from the hospital and she explained to me the histopathology findings after the operation. Unfortunately it seems that the cancer is at quite an advanced stage and has invaded the lympho-vascular system and the area around the pancreas. They also found a second type of cancer nearby, in the pancreas, that is probably less malignant. While all that is not very encouraging, they did not find any indications of cancer at the edges of the tissues taken out, so there is still the possibility that the operation succeeded in removing all the cancer. At the doctors’ suggestion, I will probably start a six-month course of chemotherapy sometime between six and twelve weeks after the operation.

I know some of you are wondering how I am doing and how practice might be helping. Well, briefly: so far, so good. I feel in my spirit deeply at peace with the possibility that I may die in the not too distant future. I hope it won’t be for quite a while. I definitely don’t want to die, but I still sense and have access to a perception of a timeless dimension to everything – the fruits of practice, I’m sure – and that makes a huge difference. I feel too, on reflection, that I have lived my life and made choices as fully as I could from my heart’s truths and deepest longings, allowing and encouraging what has wanted to come through, so I have no regrets. I feel also very strongly that I have received so many blessings, so many graces, in this life and even now through these challenges. Something in my heart just keeps bowing to it all.

A few days ago I moved into a small cottage in a beautiful area of Dartmoor. Thank you so much to everyone whose generosity and kindness has made this possible. And thank you to all of you for your love, prayers and beautiful words. I feel held by and woven into something vast, wonderful, luminous.

With love and blessings,
Rob

Hi everyone. There isn’t really much to report on at the moment but I thought you’d appreciate some non-news over no news at all..

There’s definitely been an upward trajectory to Rob’s energy over the last few weeks as we’ve been able to serve bigger and more varied meals, which is wonderful to see. Day to day he is still physically quite up and down though so progress is neither linear nor predictable. At least he’s exercising a few more taste buds now so eating is slightly less of a chore

Thank you all for your ongoing words and offerings, so much warmth on this page!

Lots of love,
Mark

I am definitely feeling much better than I was a while ago. I’m nowhere near what was normally healthy for me before I got ill, but I have more energy than a few weeks ago, am able to eat more and a somewhat wider range of foods, get a little exercise, and even do a little bit of work

I’m gonna be starting chemotherapy on Wednesday. It’s supposedly quite a tough course, and I am very aware that there is only really a small chance of cure, so it’s a bit of an experiment, but I’m inclined to give it a try. If I am able to tolerate the regimen and all goes well, they will add some radiotherapy to the mix in a few months’ time.

I am certainly very open to the possibility of other treatments options, more experimental or whatever, so if anyone does have info or leads to share please feel very free to forward them to Mark.

Thank you again so much for all your beautiful and touching expressions of kindness and support.

With love and blessings to all,
Rob

Hi everyone. For those of you who are interested in Rob’s exploration and teachings around imaginal practice you’ll be delighted (and amazed?!) to hear that a whole new set of talks have just been uploaded to Dharmaseed – 24 hours worth! Most of these were recorded shortly before Rob’s operation, with the final few completed in three or four days of greater energy and wellbeing just before his chemotherapy began. The territory for practice that Rob opens up with these is breathtakingly vast. Have a listen
http://dharmaseed.org/retreats/2678

With love,
Mark

I am now into the second cycle of the chemo regimen and kind of settling into the routine involved. Physically it is quite up and down. I have lost even more weight in the last few weeks and my digestion is further challenged by the chemo. Sometimes there is pain and there are other difficult side effects, but it changes even in a day; it’s not predictable and often it’s really relatively fine. In many ways my body is also still recovering from the op, and learning a new way of digesting food; it feels quite different, so that I have to gradually get to know it and decipher its new signals.

Right from the beginning of my illness it seems there have been so many unknowns, and that aspect of it all continues. Even within the NHS there are different opinions about treatment and also to an extent about my prognosis. I have now been advised not to undergo radiotherapy but to stay instead on the double chemo regimen for 6 months (and possibly on chemo indefinitely, but will have to decide about that).

A big thank you to those who sent in suggestions and leads for other complementary treatments. I quickly found that I got overwhelmed and exhausted trying to research these different options, medical papers and data myself, so I asked Bergljot and Nandiya to be my ‘medical research team’. They kindly agreed and have already done an incredible amount of work on this on my behalf. Thank you so much, guys! For those of you interested in knowing this sort of thing, I’ll very soon be adding a few complementary treatments, including a curcumin preparation, a mixture of certain medicinal mushrooms, and possibly Alpha-Lipoic Acid.

Though I have much less energy than I did before, my spirit remains mostly well – quiet joy and a sense of deep beauty and grace are still very frequent visitors. One doctor not only said it was okay but even advised me to start working a little again, which I have now, and as time goes by I’ll see what and how much is possible in this regard.

I continue to feel so very touched and blessed by all your messages of care and well-wishing. It feels like they really enter, permeate, and hold me, body and soul, and I am profoundly grateful.

With much love to all,
Rob
(ps here are a couple of photos from today)

In a way it does not feel there is much new to report as I go through the months of chemotherapy. At times some of the side effects are quite challenging physically for me but, as I reported last month, these symptoms come and go even over the course of a day, and I am still doing mostly okay with everything. Often I don’t have much energy. And I have lost weight; it seems to me that I am really quite thin and bony now. This is actually a little bit of a concern as the oncologist said that if I lose too much weight he will have to reduce or stop the chemotherapy treatment. Hopefully that won’t be necessary, as I am trying different things now to stabilize my body mass. One bit of medical news is that I have just started on a specially prepared turmeric compound, which aims at disempowering cancer stem cells, together with some Traditional Chinese Medicine, intended to help with everything – the recovery from the op, the chemo side-effects, and the cancer. I’ll probably be adding some other alternative treatments to the mix soon too.

Maybe, though, there’s other stuff to share. Kirsten told me the other day that someone asked her about me. “I read the official version,” she said, “but what’s the unofficial version? How is he really?” “There is no unofficial version,” Kirsten told her. “He really is how he says he is.”
Now I wonder about this. I really don’t know and I certainly wouldn’t want to presume in any way what was behind this particular person’s questions. But here or in other similar sorts of instances there may be in the background an important issue at stake. Generally we tend to see everything through the lenses of our assumptions; and assumptions about practice and possibility will inevitably have significant consequences – for our practices, obviously, but also for the ways we live and envisage the trajectories of our lives, and even for our basic senses of and feelings about the whole of existence. Of course these assumptions are various – nowadays, perhaps, more than ever – and their consequences can unfold in various directions. Listening to so many practitioners in different teaching situations, however, I often find myself wondering in particular if many people have, for a number of reasons, already set up in advance absolute and immovable limits on what they might admit is possible through practice, not just for themselves, but for everyone. To me, that’s sad, if it is the case. And it makes me want somehow to persuade and encourage people out of and beyond their limited sense of what’s possible, wherever they have absorbed that sense of limitation from. I am generally a quite private person, though, and perhaps even more so in regards to my practice, so I don’t often share much about my practice and what happens there. But I wonder now (still with some hesitation) if it would not be more helpful to do so sometimes. I truly believe that far more is possible, for everyone, than most people think.

There are so many examples one could give – and in a way that is the main point – but here is a brief account of a very particular opening that has happened quite a few times now, most recently some nights ago:

Tonight again I cannot sleep. It’s not that the pain is so constantly intense; it’s more the discomfort of a digestion that just will not settle, and that’s enough to keep me awake. Having lain there in vain for a few hours, I haul myself up in the bed and cross my legs in the darkness. How to practise now? How to look?

Well, I could ‘be with’ the sensations, the vedana, but that doesn’t really call me at present. Instead I include the sensations in a wider awareness that encompasses the whole body and the room, and tune in to that sense of awareness. Lightly reminding myself now of its thorough emptiness and of the emptiness of time – of past, of future, and of the present too – a sense of exquisite beauty and of freedom suddenly blossom there and fill the space. And there is too a sense of the inseparability of this awareness and its objects – the room and the world around me. I ‘lean further in’ to the timelessness, and perceive the whole of my life – this moment and all the events, all the experiences – as having in some inexpressible way both a timeless as well as a temporal dimension to their existence.

The taste is so subtle and so sweet that I could stop here or just allow the self to dissolve in that emptiness, that totality. But rather than that more familiar track, I veer toward sensing that all of it is ‘me’; I see and feel it now that way: a ‘me’ that is not separate from the timeless, that is immanent and transcendent both; ‘my soul’ rooted in, and not separate from, ‘God’, or ‘Buddha Nature’, or whatever we might want to call it. This soul, however, is thoroughly empty, I know – it has no inherent existence, no existence independent of the way of looking – and there is no need to claim it as an ultimate truth or as anything more than a skilful perception, an insightful way of looking. But this knowing of its complete emptiness takes nothing away from the beauty and power of the perception.
Now I linger there and sense something further: that this soul includes also both the universal and the intimately personal dimension of being – me and my unique personality and expression, all that comes through me and all that I have shaped and that has shaped me. None of that is separate from God, from this Buddha Nature, this timeless dimension that is both transcendent and immanent.

And it includes too my death, and the duration of my life; the timespan of my life, whether that turns out to be ‘long’ or ‘short’, is itself an aspect of my soul. It is not other than my soul, which is not separate and not wholly other than the depths and the timeless heart of the divine. I would love to live; I want to keep playing, experimenting, creating, discovering; to keep giving, receiving, loving, and praising. And at the same time I see, in a way which does not involve thought, that the timing of life and death is perfect, is ‘me’, is my soul, is divine. Peace and awe and a deep bowing of my being as I remain with this tuning of the perception. I suppose I could stay awake here; there is plenty of energy and brightness now, and it is very lovely. But the body needs to rest, so at last I lie down again, in this peace and awe and bowing, and after a while give myself, successfully and gratefully, to sleep.

I reflect on all this later. The more deeply and palpably we understand for ourselves through our own experience the emptiness of all things, the more possibilities open up for the perception; our range increases; we are freer to engage different ways of looking, and so to experience self, other, world, and existence in manifold ways. Though emptiness in its depths is always the same, there is not one experience of ‘Freedom’, one taste of ‘Awakening’; it is actually multiple, varied, infinite even. And it will keep growing, if we let it.

Regarding the particular perception I describe above, there are many ways in to it. And there are many ways out of the confines and assumptions of normal perception. Emptiness forms part of a way, if it reaches deeply enough – to see that time and the present, space, and awareness, as well as self and other, are utterly empty. Love too forms part of a way, if I let it open my eyes, open my sense of the beloved, whoever or whatever that is for me in that moment.

This example I share forms part of the reason why I feel deeply okay most of the time with what is happening. And it has very little to do with ‘belief’ or conjecture about what does or doesn’t happen after death. It is a perception, not even clung to as a ‘truth’, but with a power that is all the greater, more profound and more beautiful, because of that.

To me it’s interesting to ponder why someone might cling to a limited sense of possibility, but the likely reasons are many and complex, and here is not the place to expand on this. Perhaps here we may just point out that the conditions which support a clinging to certain views of limitation are not only personal; without a doubt they are also, in many ways, culturally construed and absorbed. And to me it seems crucial to be aware of and interested in this. But I’ll leave all of that for another time and place…

Right now I don’t know of course if reading and reflecting on what I’ve written here will make any difference to anyone locked in or clinging to certain views that limit the sense of what is possible through practice. Or if it will even make any difference to anyone at all. I hope sincerely that it does, though, that it might contribute, even if only in a very small way, to some questioning, experimenting, and opening in this area, for us all.

On another note, please know I still very much appreciate receiving your news, and love to hear your reports about your practice. I am just sorry that I don’t have the capacity right now to respond to most of the personal letters and emails I receive. If you have sent me something or sent it through Mark, I trust you will understand if you don’t get a reply from me. And please don’t refrain from sending, or posting on this website, on the assumption that I am not interested or will not read; I am very interested and I do read. I hope too, more generally, that you all know how deeply touched and supported I feel by your beautiful messages of care and kindness.

With love and appreciation and great gratitude to every one of you,
Rob

Dear all,

I can hardly find words to say how so deeply moved I am, touched to the core, by your generosity and your kindness. The response to the fundraising appeal which Mark, Bergljot, and others set up has seemed, to me, overwhelming; the fund has received or been promised more than enough to cover my medical and living expenses for the year ahead, enabling me now to meet the costs of the more experimental and promising treatments I am trying. I cannot thank you enough, each and every one of you, for this support and for your beautiful love and well-wishing. It all feels like such a grace.

With immeasurable gratitude and love,
Rob

ps I have some medical assessments coming up in the next week or two, so I hope to be able to post a ‘how I’m doing medically’ update very soon after that.

The last few weeks have been quite challenging physically. I had a nasty bout of intestinal upset – diarrhoea and pain that lasted for a while, and then just as that was beginning to clear up I developed a thrombosis (a blood clot) in my leg (ouch!), so my mobility is pretty restricted right now. They scanned my leg but couldn’t actually find the clot, so I will go for another scan next week. In the meantime I am on blood-thinning injections and morphine (which is ‘interesting’ but not always pleasant; unfortunately I had a pretty severe reaction to another pain medication I tried before the morphine.) The tummy upset is, I think, just a common side-effect of the particular chemotherapy drugs I am on. I am still not sure if the thrombosis is caused by the chemotherapy or the cancer itself. As I understand it, if it is caused by the cancer it doesn’t necessarily mean that new tumours have formed, as apparently there can be a delayed effect from having malignant tumours months ago.

In fact, a few weeks ago I had a CT scan to check whether there are any metastases. Happily, the scan was clean – there are no visible metastases (i.e., new tumours) at this point.

I met then with an oncologist in London, Professor Stebbing, and discussed a few things. The results from the genome sequencing of the original tumour showed that the combination of chemotherapy that I am currently on is the most helpful thing that can be offered right now. Several oncologists strongly advised me that it is crucial that I continue with chemotherapy beyond the 6 months recommended by the NHS. Prof Stebbing told me flatly that it is keeping me alive. So the chemo regimen I am now on is open ended, theoretically at least: we’ll have to see just how much my body can handle; and there are all kinds of implications regarding limitations on life-style, food/nutritional uptake, and work capacity etc. should I survive the next couple of years. I guess even though I now have just over 6 months experience of the chemo already, I can’t fully anticipate the implications for the longer term. More immediately I have to admit that chemotherapy is not pleasant; at the mere thought of those infusions my body spontaneously reacts with a subtle visceral convulsion. The prospect of staying on chemo indefinitely is not easily or simply borne.

While Prof Stebbing said that with this cancer “probabilities are poor”, he also didn’t want to talk about probabilities – wisely I think – and added that anything could happen; so much is unknown about why cancer recurs (or, as he also pointed out, sometimes disappears). He also unequivocally supported the experimental drugs that I’m on, as they are likely to potentiate the chemo.

One thing that is strange for me about the whole situation is that, while I can have periodic CT scans to check for new tumours – Dr Stebbing suggested every 2 or 3 months – there are no really reliable blood markers to indicate where the cancer is at at the molecular and stem cell level. One blood marker (called Ca 19-9) showed reductions after the operation, and again with the chemo, so that they are now within the normal/healthy person’s range, which is surely a good sign, but Ca 19-9 is not an unambiguous marker. The upshot then is that I will be continuing, potentially indefinitely, on the chemo treatment, with all its side-effects etc., without ever knowing if it is even necessary anymore. For it may be at some point that the combination of the chemo and the other experimental medicines I am on wipe out the cancer completely at the stem cell level, and yet I would not know that I could stop the chemo. A lot of unknowns with this whole thing!

Still my spirits are mostly good. It is a beautiful spring day here on the Moor, and though I can’t walk much at all right now, I rejoice in the beauty and the grace that are everywhere. And I am very thankful for the little bits of work I am still able to do. I have now been to Gaia House twice recently to offer just a few interviews for the personal and work retreatants, and it was lovely to be back there meeting with yogis. As much as I am able, given the various time demands that come with illness, I am writing a little bit too, which mostly feels wonderful.

I also want to say what a delight it has been for me to receive so many letters and emails from so many of you telling me about your recent practice and discoveries. I only wish that I could respond to each and every one but that is not really possible, alas. I do read them all, however, and they touch my heart and my mind deeply, and fill me with appreciation.

And I am still so moved, awed and somehow humbled, by the flow of love and support that seems, like an unearned and undeserved grace, to pour into me from so many. I open myself to it every day, and my whole being bows in gratitude. Blessing, infinite in its modes and colours, often seems to me to be the very nature of all things, of all existence.

With so much gratitude and love,
Rob

Hi everyone,

I just wanted to give you a quick medical update, since many people have been contacting me and I am not quite able to respond adequately right now.

I spent last week in hospital. Though I was definitely experiencing, together with other symptoms, a marked increase in the intensity and constancy of tummy pain in the days beforehand, I did not realize until I actually measured my temperature that I had a fever. Instructions were to go straight to A&E. I had a week on intravenous antibiotics, and lots of morphine. Though they were unsure of the original location of the infection, a CT scan showed that my intestines were swollen and inflamed as a result of the chemotherapy, so I have been told to stop chemo until they recover.

One oncologist is worried that the chemo itself might kill me (“You were proper ill,” he told me in hospital) and so is reluctant to prescribe it again. Another oncologist has told me that the chemo is what is keeping me alive, and that I should go back on it, perhaps at a reduced dosage, as soon as my gut heals. Conflicting opinions; tricky decisions.

They also finally found a thrombosis in my thigh – I don’t know whether it is the one from before that has at last become detectable or if it is a new one, but anyway I am now on a 6-month treatment of daily injections for that. My leg is still swollen but not nearly so painful. Apparently blood clots above the knee tend to cause less pain, but they are more likely to be dangerous if a bit of the clot breaks off and travels to the lungs etc. It sounds like the treatment should minimize the risk of that, though, so no need for concern. It could be the cancer causing the thrombosis or it could be the chemo – impossible to tell.

And as I had become pretty anaemic again, they also filled me up again with some kind and anonymous donors’ lovely dark red blood. Here too there is some uncertainty: it’s not clear if the anaemia was a result of the infection or just of the ongoing chemo, or the combination.

So now I am back home on Dartmoor and feeling relatively fine – tired but generally recovering. Hopefully my gut is slowly recovering too – they say it takes some weeks to do so.

And for now I am off chemo, body and soul in part greatly relieved at that. Fairly soon however, I imagine I will have to make a decision whether to resume it or not. I was hoping to be able to teach the upcoming retreat during a week or two off from chemo, but may have to settle for teaching it while on chemo. If so, I hope that is manageable; we may have to be more flexible and responsive with the scheduling of the retreat.

I don’t know: perhaps all this sounds worse than it is (or at least worse than I feel that it is)? Physically it was hard at times, sure, but not really so terrible. And though fatigued, I am feeling definitely quite a bit better now. I even managed to go to Gaia House yesterday and offer a few interviews, which was lovely.

In my heart and spirit I am still feeling mostly very well. Lots of creativity – deep and seemingly necessary life-blood for my soul – continues to flood through in many different ways, which I love and am so thankful for. Sometimes, though, it can be a bit overwhelming, as I often feel I have so little time to make it manifest, to write or record, communicate or share it – not only because of the suggested prognosis of the cancer long-term, but also day to day: the days easily fill with medical stuff, and the basics of life are now so much more time-consuming. Still, practice is creative, new insights and openings come, graces and blessings pour through, there is so much beauty, and I feel so grateful.

And I am so grateful too to all of you, for your great generosity but also for your amazing, sweet, and steadfast love, your kindness and care that seems so palpable to me, even in the absence of more concrete communication. Despite everything, I honestly feel so lucky, so blessed, so profoundly held. I am receiving so much from you in that way, opening myself to it and taking it in body and soul; I am drinking it in and being nourished.

With love and boundless gratitude,
Rob

Hi everyone,

just a brief update, as things are not entirely clear medically right now. I hope to post a more definite update when I have a better picture of the situation and the plans.

The pause in my chemotherapy has been extended – it seems until early September at least – because my intestines were in pretty poor shape as a result of the treatment. I had a C. Difficile infection apparently, and needed an extended period of antibiotics to fully treat that after coming out of hospital. Also, despite years without any incidence of Crohn’s disease, it looks like the chemotherapy may have triggered a flare-up, as well as other gut problems. I am now taking medication for that, and awaiting the results of various tests so the doctors can get a sense of when it might be safe to resume chemotherapy.

Some weeks after stopping the chemo – the drugs take 6 weeks or so to clear from the blood stream – I really began to feel physically better, to feel, after almost a year, some vitality in my limbs once again. How wonderful! I am continuing to very much enjoy this gift of energy, and even despite the intestinal situation have been able to exercise more and also to put on some weight (after losing so much, this is a task to which I have applied myself with the utmost diligence , as I’m supposing I will lose quite a bit again when or if I go back on chemo).

Very fortuitously then, the retreat week I taught with Catherine at Gaia House a couple of weeks ago fell at just the right time: I was over the worst of the infection, and had been off chemotherapy for just long enough to feel this greater physical well-being. We had to make a few modifications in the form to accommodate my illness and energy levels, but it was a beautiful week and such a privilege to teach. And it was lovely, profoundly and unexpectedly touching, to be back at GH that way. A deep bow and thank you to all the retreatants, to Catherine and Mark, to Jane and Nandiya (who cooked and helped with my complex dietary needs), and to all the GH coordinators and staff who made it possible.

And so much love and gratitude to all of you too for your continued support, your care, and your kind words,
Rob

ps here is a fun, fuzzy photo, with feathers…

Dear everyone,

Sorry for the long hiatus since my last medical report. Over the last couple of months there have been a lot of tests, meetings, and decisions to make, most of which have only just now been resolved.

Briefly then: I had a PET scan a few weeks ago which showed “no signs of active disease” at present. As seems to be so much the case with the particular cancer I have, there are differences of opinion among the doctors as to the significance of the result. Clearly though, it’s not bad news, at least, and some of the doctors were very encouraged, albeit aware that cancer cells may well still be hiding or temporarily suppressed by the chemotherapy.

Also a few weeks ago I transferred my medical care to another oncologist, who, unlike the first, has said that despite knowing it’s “a tall order” he is actually aiming to cure me. What that means, though, is that he is willing to experiment at the edges of conventional treatments, and to prescribe a continuing use of two chemotherapy agents rather than one, even if there is some risk and uncertainty in doing so. So, after a break of three and a half months – a pause which made my new doctor a bit anxious – I have just completed the first cycle of the new chemo regime under his supervision and care. I am on a reduced dose of both drugs and hopefully my body can tolerate that better. (So far, not too bad, it seems, although I know the side-effects build up and take their toll over time.) It’s unclear to me how long I may have to be on chemotherapy, or even how we will ascertain at any point that it is safe to come off the drugs, if that is ever the case. However, it feels like the right decision for now. Not only do I resonate with his inclination to research and experimentation, it feels much better to me to be working with a doctor who is at least trying to cure me. My first oncologist would not prescribe the two chemo agents any more, nor was he so willing to experiment with treatments. I think I understand and empathize with his worries, but at the same time I don’t think he considered it a possibility that further treatment might cure me, and so was not aiming at that.

I’ve also had a Crohn’s disease flare-up in the last few months. It’s not too bad, but it clearly needs addressing, so I have ongoing tests coming up for that too.

Because of all this I decided reluctantly to pull out of teaching this year’s November month-long retreat at Gaia House. It made me sad not to be able to teach it, but given the unknown impacts of the chemotherapy and how it affects my already very weakened intestines as well as my energy, it seemed the wiser option. I am still trying to write as much as I can, although in truth that seems to me to be not nearly as much as I would like. Strange being so ill: as well as from the actual effects of the illness and the side-effects of the medications – principally diarrhoea, meaning a lot of time on the toilet(!) – the days are often full just from trying to meet all the different medical needs that are involved.

And yet my spirits are mostly good. I am the recipient of so much kindness and goodwill and I have such a generous and wonderful team of helpers here. (Alas, one of them, Nandiya, had to leave last week as her visa expired; I will certainly miss her amazing cooking and her multi-faceted support.) Sometimes I can hardly believe it all. I feel so blessed, and in so many ways.

And I am also, beyond measure, grateful for the fruits of practice. I do want to live and yet I know I may well die quite soon. Still, whatever happens, there is for the most part a profound sense of peace, and even of joy, with all of it. Hard perhaps to fathom why. But I want to say: practice works! (if we go about it in ways that work.) Through practice I came to see the emptiness of time – past, future, and present – of consciousness, and of all things, and that seems to me to be what makes such a huge difference. Seeing this emptiness is not a deflationary seeing; it does not denigrate or dampen soulfulness nor does it drain the mystical wonder out of things. Quite the opposite: it reveals and opens their beauty, depth, mystery, reveals to me the transcendent and immanent fullness and joy of my participation in the cosmos, allows me to realize the fecundity and meaningfulness of the particulars of things and of persons. I am grateful, humbled and awestruck: exploration and practice keep opening out. It’s not, of course, that it’s constant or never interrupted, but something deep in me keeps bowing, over and over again, to the gifts of existence, of this world and others, of this mind and heart, these particulars and persons, this beauty, these openings.

And I find myself again and again wanting to thank all of you for your wishes, prayers, words and letters of care and support, for your kindness and generosity. It all continues to touch me so much.

With great love, gratitude, and appreciation to each one of you,
Rob

Hi everyone,

Just a very brief medical update right now as there is thankfully not much to report. My oncologist is in general pleased with how I am faring. When I saw him last week, though, he told me that a certain marker in my blood had just suddenly shot up and that that might mean that tumours had returned. They did another blood test right there and then to check again, and I have just found out that those readings are normal. So it was a false alarm, and apparently I don’t need anther scan at present, which is good.

Otherwise, I am settling into the rhythm of this new chemotherapy regimen. There are definitely side-effects, but because I am on a lower dose than I was on before, these so far seem easier for my body to handle. And I am still for the most part feeling very well in spirit.

I want to say again to each of you a huge thank you for all your amazing care, kindness, and generosity, in word and in deed. It continues to touch me to the marrow of my being.

Wishing all of you very well over the holiday season.
With so much gratitude and love,
Rob

Hi everyone,

Not much new news at present – which is good news in a way – but just wanted to let you know that things are quite fine with Rob. He’s relatively well given the chemo regimen; physically and in terms of side-effects it’s up and down, as usual, but he’s generally ok and able to do some work. He had the standard weekly pre-chemo blood tests this morning and all being well he’ll start month 14 of chemotherapy tomorrow…. Long haul!

For those of you signed up for his retreat with Catherine next month he’s still very much hoping and planning to be there

Thank you all for your ongoing support, in all the beautiful forms that comes in –

With love,
Mark

Hi everyone,

Before the whirlwind of the upcoming retreat, I wanted to at least briefly share with you my gratitude and some of the medical news following yesterday’s long medical trip to London. I had PET and CT scans there, and thankfully they showed no signs of active cancer at present. My oncologist was really delighted; he was pretty surprised in fact, for apparently this is quite unusual at this stage. He admitted that he had been worried and assumed that the scans would show that tumours had returned, and so prior to the appointment he had already gone ahead and placed me on a research trial treatment for metastatic disease. Instead now, because of the health risks and side-effects it brings, he has taken me off one of the chemotherapy agents I have been on for many months. Hopefully that will prove a little easier on my body. I’m still on the other chemotherapy drug – the one that’s allegedly the more toxic of the two, but that is easier for me to take, since it’s just pills – as well as a whole host of other medicines, both ‘mainstream’ and ‘alternative’, so he will continue to monitor me closely.

It’s hard, I guess, to know exactly which medicine or what combination is having such a helpful effect – we are clearly in the territory of experimental treatment already – and it’s hard for the doctor or any of us to make choices here that are not based at least partly on hunches. I am keenly aware too that there is a long way to go; generally cancer patients are not declared ‘cured’ until they have survived 5 years from the time of their operation. But I have a feeling that all your well-wishing and prayers have been exerting their magical and wonderful influence, and I am so very grateful for, so deeply touched and humbled by, your love, your care, your support and kindness.

With blessings and a heart full of huge gratitude for all of you,
Rob

ps Here are a couple of photos: one is from last week (in case you’re alarmed and wondering, that’s not really what I look like these days – while I was resting, some of my lovely helping friends took it as an opportunity to refashion my style…); I look more like the other one, taken a few weeks ago with my friend, Archie.

Hi everyone,

I just got back from a few days’ medical trip in London, where I had PET and CT scans, and met with a doctor. Very happily the scans, two years to the day after the operation that removed the tumour, showed no signs of any active cancer.

That is, I think, extremely good news
However, this kind of cancer has a strong tendency to resurface, so one is not out of the woods until at least five years have gone by disease-free. Also, there is still some confusion around my healthcare. It’s been going on for the last few months, in fact, and is the reason I haven’t posted an update in a while. Unfortunately, because of his willingness to try experimental treatment protocols – the very reason, given my prognosis, that I chose him as my doctor – my regular oncologist is under investigation by the GMC, and so not able to work at present. This has meant that my scans were postponed a couple of times, and getting treatment for the last little while has been quite difficult. I was unable to receive any chemotherapy last month, and the oncologist I met with yesterday, a very nice man I had not met before, did not want to give me any more. He didn’t comment much on the scan result, but said that prolonging the chemotherapy and the daily injections would cause long-term damage to my bone marrow and intestines, and that this would potentially compromise the possibility of future treatments, should I need them. I am unsure when, or even if, my original oncologist will be resuming work – I really hope, for his sake, for mine, and for all his patients, that he is reinstated – but it seems that again I am encountering a significant divergence of medical opinions, in a territory where sure information and conclusions are not at all established. As soon as possible I will try, though, to get the advice of my former oncologist and a sense of my medical options.

In the meantime I have a little break from chemotherapy, which is probably not a bad idea. Although I don’t feel too bad at all right now – ongoing fatigue and diarrhoea notwithstanding – my recent blood results do show some deficiencies in the blood and my bones seem to have become a little fragile.

So, the scan result is good, and at the same time there is some confusing complexity and uncertainty around my medical care.

With all this it’s strange not feeling able to make plans or commit, with anywhere near the normal degree of un/certainty, to anything further in the future than the next scan, scheduled now for every six months. And it’s strange, too, not knowing which or what combination of all the medicines and treatments that I’m on, mainstream and alternative, are actually helping. But right from the beginning, my illness seems to me to have been characterized (perhaps even more than might normally be the case) by a large dose of uncertainty, of factors and conditions unknown. That is a significant aspect of what I have been given to relate to; and that continues. I suppose as well, although I’ve been managing in the last few months to go into Gaia House once a week to do a few interviews, and have also been able to work a little at home, I’ve grown accustomed to having much less energy and stamina than I used to have, and accustomed too to the time and attention that are taken up by being ill and all that that involves. But I feel such a steady flow of love and help coming my way; it continues to amaze, nourish, and touch me to the core of my being – a waterfall of blessings for which I am so deeply grateful. I want to thank you all so very very much for all your support, your kindness, and your generosity.

… A little more time, then, for this life, all this mystery and this beauty. A door opening, a realm of heart opportunities – for endless exploration, for all these gifts and this giving – the play (and work) of creation and discovery.

With love and gratitude to each and everyone of you,
Rob

Hi everyone,

Just a brief update for now: My original oncologist is thankfully now able to work again so, after a rest of about 3 months (which felt great!), I was able to get a new prescription for chemotherapy, and started that about a week ago. I dropped a few of the drugs I had been taking before but added a few new ones too, so am still on a combination of many medicines (both mainstream and alternative) and many of them are ‘experimental’. Physically I am feeling quite well at the moment, but because the side-effects of the chemo tend to accumulate over time – and in fact I am already noticing marked effects on my digestion and on energy levels – I thought it wiser not to try to teach the November Solitary month-long retreat at Gaia House this year. A CT scan has been scheduled in a few weeks’ time, and also a different kind of scan at some point soon to check that my bones are okay.

Recently several people have asked me why I need more chemo if I am currently “cancer-free”. The answer is that although the last scan showed no signs of tumours, it is very possible, especially with pancreatic cancer, where the probability of relapse is notoriously high, that the cancer is still there at a cellular level, invisible even to a high-resolution scan yet waiting to grow and form tumours and metastases. Despite the risks of the treatments, then, continuing chemotherapy for a while longer, if possible, seems to me a good idea, given the severity of my original illness and prognosis; I also feel that my body is tolerating the chemotherapy relatively well. Long haul, yes … and the challenges – around time, energy, and limitations on work and mobility – which I mentioned when I wrote last time still remain for me, but mostly I feel really okay about it all for now: I am so thankful for all the breadth and depth of the resources, the beauty, and the stamina that are the fruits of practice, past and present. But I am so touched by and so profoundly grateful to you too. For I know that these gifts are as well the blessings of all your kindness, generosity, and support, and of all your metta and your prayers, which also sustain and nourish me and (I am sure) work their penetrating, healing magic somehow. I feel quietly awestruck, baffled even, by all that is given to me, inexplicably, undeservedly, in the mystery of grace.

With much love, appreciation, and gratitude to each and every one of you,
Rob

Hi everyone,

Just to update you on a few things..

We went up to London on Tuesday for a couple of scans and the first thing to say is that – amazingly – there continues to be no sign of cancer in Rob’s body. No one can be sure why that’s the case or what exactly is working its magic, but his oncologist said that with the particular pancreatic cancer diagnosis that Rob had it’s almost unheard of to have gone so long without relapse. So this is really wonderful, very good news. Given the aggressive nature of this type of cancer, though, it is certainly too early to consider him cured, so he will continue on the chemotherapy and other medicines for now.

The other scan was for Rob’s foot, and it confirmed that unfortunately he has a broken heel. He was diagnosed with very severe osteoporosis a couple weeks ago and this means that the bones are extremely fragile and can be broken very easily. He’ll be given another drug to help treat the osteoporosis, though the prognosis isn’t exactly clear with that, and he’s waiting now also to see what can be done with his heel.

Sadly, on the drive up to London we were involved in a car crash. Rob’s car was written off but we are both ok, as are the others who were involved (as far as we’re aware). Rob suspects he has broken a few ribs, and we’re both aching, but thankfully nothing more serious than that. He just needs to get a new car (so is eyeing up a hybrid).

Hope you don’t mind that it’s me writing this update. Aside from trying to navigate through a jungle of medical appointments Rob is unsurprisingly feeling a little battered. But he wanted to let you know of these various things that have happened.

Wishing you all much love wherever you are –
Mark

Hi everyone,

I wanted to share a short medical update with you.

A couple of days ago I went to London for a CT scan, and received the results today: no signs of tumours at present, which is great news. The doctors don’t really understand why there has been as yet no recurrence of tumours; usually with this kind of cancer and at the stage it had reached before my operation, it would already have emerged again. We are, then, in somewhat uncharted territory. I too am certainly baffled, but very very grateful to be given more time and the opportunity to practise, teach, and explore for a little while longer. And of course I don’t know what the future will bring.

Some of my blood test results from the last few months are apparently quite strange. However, although they warrant further investigation I don’t think they signify anything too serious.
I am still waiting to see the bone doctor, despite being told in mid-November that I have extremely severe osteoporosis. (I’m guessing the wait just reflects the very strained state of the NHS.) My bones are pretty fragile and fracture easily, it seems: sometimes just twisting my body or stepping a little heavily will do it, so I have lost count of how many fractures I’ve had in the last couple of years – mostly to my ribs, which can make sleeping difficult.
But my body actually feels relatively okay much of the time. (Perhaps I have become accustomed to having less energy than I had before I got ill, a much more restricted lifestyle, a very tricky digestive system, etc.)

I am supposing my oncologist will scan again in three months. In the meantime, because of pancreatic cancer’s marked tendency to recur, I will continue with my unconventional chemotherapy treatment, as well as with a whole host of other unconventional treatments.

I want again to say from the bottom of my heart and the depths of my soul a huge thank you to each and every one of you for your kindness, your generosity, all your support, and for all the prayers, healing energy, and well-wishing you have sent me. I feel so profoundly grateful.

From a snowy Dartmoor, with great love and appreciation,
Rob
ps here is a fun photo from the trip to London

Dear everyone,

The last few months have been medically quite complicated for me. I feel that I am relatively well nevertheless, but am still reeling a little physically even as I write this.

A couple of weeks ago I was admitted to hospital with intestinal bleeding. Happily, it turned out it wasn’t caused by a return of the cancer – I assume that the cancer, if it emerges again, would be ultimately fatal – but just a bleeding stomach ulcer. I didn’t know, but the doctor there told me it’s very common after the kind of tumour-removing operation I had in 2015; acid can build up at the surgical joins inside and cause ulcers. They kept me in for a few nights, gave me an iron infusion, and started me on a new medication to add to my now impressively extensive list. (I have lately developed certain long acronyms, arcane, guttural, and thickly tongued, to remind me which pills to take at which times on which days.) Definitely I was a bit wobbly afterwards but feel I recovered fairly quickly.

Shortly before this, though, I was also given a blood test for a cancer marker I’d never had tested before. It came back raised beyond the normal range. A brief rummage in google revealed that I should indeed be concerned and my oncologist’s terse – and sometimes cryptic – communication clearly confirmed this. (The other, regularly-tested, cancer marker is now always high. I’m not sure what he thinks of that, but I read a while ago that drinking a lot of green tea – which I take for its anti-cancer properties – actually raises that particular cancer-marker, so I kind of ignore it myself(!)) The new test was redone after a few weeks, and though the level then was still raised above what a healthy person’s should be, it was thankfully lower than the previous reading. If I have discerned his articulations correctly – he is fantastic but enigmatically monosyllabic – my oncologist seems to have decided there is no need for an immediate scan to hunt for fresh tumours. That’s a relief.

These kinds of false-alarms have happened a few times now over the last three years. It’s strange: certainly not that they cause no anxiety at all, but in a way I seem to some extent to have become almost used to them, used to the long-term demands and challenges of holding all this psychically as well as physically and, in that, used to the fact that at any time I could be told I have only a few months to live. Plans considered seriously are only those that extend no further than the next scan, never more than a few months away. The time I have I feel as a gift, and yet as mysteriously ‘timeless’ too; it forms for me an apparition, a threshold or liminal space, a duty even. It (life, world, time, my continuation even briefly) is not, I sense, a ‘given’, a ‘ground’, a surety; it is ephemeral and uncertain, yes, but more: it is somehow mystically insubstantial, an offering and a play of wondrous and beautiful theophanies, a theatre of light projected but mattering most profoundly. And somehow this ebb and flow of imminent threats and alarms is part of the sense of the long-haul even-keel attitude which I take it I have been asked to practise from the very beginning with all this. Part of a ritual performance, part of a bow.

The other day I also finally had my first treatment for my bones. Depending on the severity of the condition, there are a whole range of possible treatments for osteoporosis. Alas, because my bones, I am told with insistence, are in such an extremely dire condition, I had one of the more extreme treatments. I felt very ambivalent about it. Just as with cancer and chemotherapy, there is a fair amount of controversy around osteoporosis drugs, and one could easily spend hundreds of hours researching the various conflicting and vehemently expressed opinions, only to emerge confused and unsure whom or what to trust. Well, I did a little research, got sufficiently confused to land precisely there, but rolled up obediently for the infusion anyhow. It is a very slow-working treatment they say; evidently, though, I was one of those who got the immediate flu-like side-effects. I’m mostly over it, I think, as I write this this morning, but still feel a bit ragged.

Finally, sometime over the last six months I have developed hyperthyroidism. No one yet has explained why, and it seems that often the why does not interest the doctors much; only treatment does. Of course I wonder if it is a result of the cocktail of medications, mainstream and alternative, that I have been on for a while – those whose names I now ceremoniously, if mumblingly, intone every day – but I may never know. Quite intense symptoms at times: heart racing and thumping very loudly, hard to sleep, feeling pretty odd, weight loss, etc., all of which results in a kind of ongoing slightly manic exhaustion. After a series of blood and heart tests, I was started on a medicine for it last week. Apparently this drug takes 6 weeks to begin to have an effect, but all being well I’ll be getting some thyroid and metabolic relief shortly. Phew…

So, for the very brief version of this update: despite a varied brew of new and strange conditions, treatments, and side-effects, and continuing on the chemotherapy and lots else, I’m still doing relatively well, considering.

It’s hard for me to describe the ongoing and profound gratitude I feel for all your support, for your deeply touching kindness and generosity, for all your beautiful prayers and your well-wishing; much of the time I feel bafflingly enveloped in a kind of mist of the grace, the tenderness, mercy, and mystery of it all. From the bottom of my soul I can only say thank you, and thank you, a thousand times to each of you.

Wishing you all peace,
with much love and blessings,
Rob

Hi everyone,

Although things are a little bit mid-process right now, I wanted to give you a short update on my health situation.

Very late last night I got back from a trip to London for a scan, which turned out to be longer and more complicated than anticipated. I had a CT scan there the day before which showed some nodules on my lungs and something on or in my liver. The lung nodules have in fact been there for a while; I think they are related more to some of the rib fractures I have had in the last few years, rather than to the pancreatic cancer. My oncologist was more concerned about the liver growths. So I stayed another night and had an MRI the next day, which revealed two lesions in the liver. Alas though, this scan too was not completely conclusive; it’s hard to tell exactly what the growths are. The doctor is hoping and inclining to the suspicion that they are benign tumours (called hemangiomas, which apparently are not that uncommon) but has scheduled me for a similar liver MRI in two months.

However, physically I actually feel in general better than I have since I was diagnosed over three years ago. Yes lots of ups and downs within that over the last couple of months (and it’s true, a seemingly growing collection of ancillary ailments), but I think it’s more than that I have just become used to being ill. People keep telling me I look well (which is nice to hear ); and at the end of his report the oncologist too said I don’t look like someone who has metastatic pancreatic cancer, which is also one of the reasons he is leaning towards a cautious hopefulness right now. He reiterated his intention that I be completely cured someday, and for the second time in a row emphasized the importance of my “attitude” and “mental strength”. For the present, as for many periods already since being diagnosed, there is a time of more acute not-knowing: this is what I am given to be open to, to surrender to, to be humble and prayerful with, as deeply and as fully as I can.

In the longer term too – if indeed there is a longer term – there is another kind of uncertainty, which I have mentioned before. I asked him how we can know what is happening at the cellular level, i.e., whether or not there are cancer cells invisible at present but waiting to reassert themselves and multiply into tumours; and what exactly is the state of affairs between such cells and the ongoing chemotherapy. “We can’t know”, he said firmly, and added, “We’re way beyond science now.” When I asked a bit more, he explained that all this is quite unprecedented, that we are in the realm of experiment and intuition as much as proven and well-trodden medical pathways. I suppose, then, that we will have to navigate those particular uncertainties and their choices when and if the time comes.

I will of course keep you updated as things unfold and the picture becomes clearer. Meanwhile, I want to say again from the bottom of my heart a huge thank you to you all for your love and kind support, your generosity, your prayers and well-wishing. It all makes such a difference, on every level. I think I have written this to you before, but I continue to feel so profoundly touched by it, woven into and held by your love in a mysterious web of grace, light, and sustenance that extends way beyond me, and that I don’t really understand. But it makes me bow.

With love and blessings to each and every one of you,
Rob

Dear friends,

Rob’s having an important scan on Tuesday (6th) and has said he’d appreciate any prayers people felt moved to offer. The scan is scheduled for 12pm (GMT) and the results should be in by 5pm. If you were inclined to light a candle as part of your prayers, and post a photo on here, that would be a lovely way for Rob to see the weave of loving support coming his way. But of course no obligation to do that – all prayers of all forms gratefully accepted! A few of us will be sitting on Monday evening, and others through the day on Tuesday, so join in and have a sense of sitting with others if you like

Lots of love to you all,
Mark

Dear everyone,

I just got back from London in the wee hours this morning, and although things are still a little confused I want to keep you posted with a brief medical update.

Yesterday I had an MRI scan, which showed that the two tumours they had detected in the liver a couple of months ago are still there, although they have not grown since then. It is, however, still not entirely sure whether they are malignant or not. They look quite a lot like benign tumours (haemangiomas), but with some differences; the picture provided is not clear enough to be fully certain yet either way. Usually they would insert a needle into the tumours to take a biopsy to find out, but since in this case they are wrapped in bundles of blood vessels that is impossible to do without the risk of dangerous bleeding.

A few days before the scan I had a blood test, which showed that one of the blood cancer markers has shot up high. The other blood cancer marker remains higher than what is normal for healthy folks, but steady at what has been a normal level for me over the past little while. So this set of blood results were inconclusive too, and the doctor just said he doesn’t know why the cancer marker is up so high. It seems it can be raised from other causes, for example when there is infection etc.; it’s not by itself a very accurate gauge of things.

I have still for the most part been feeling relatively well over the last couple of months. (Of course there are always plenty of quite marked ups and downs within that, often even within one day. A few weeks ago I came down with a fever, and because some of the medications I am taking can radically undermine the immune system my GP was unsure whether to admit me to the hospital. Blood tests showed, however, that my immune system was fine, so no hospital and the fever abated fairly quickly.) And again yesterday my oncologist remarked that I looked well. Apparently, though, even how one feels and looks can sometimes be very misleading with cancer. He wants to keep a careful eye on these two tumours, so I will have another scan in a few months.

In many ways then, the situation stands much the same as it did two months ago, and similar in fact to how it has seemed to me much of the time since being diagnosed over three years ago: a lot remains unclear, including what is going on at a cellular level (or even, now, at the tumour level); and frequent tests and scans mean that this uncertainty can at any moment turn into a certain knowing that there are indeed malignancies emerging once more – a situation I assume would be fatal (although at this point I’m not even sure of that!). To put it more succinctly, not much has changed.

And so, like the faithful hearing the muezzin’s call to prayer, I am called to find through all this a path of devotion, of sensitivity, humility, and the making of soul. To say yes to the calling. In that, something in me seems to keep bowing, again and again to open and even embrace in curiosity, trust, and love the ongoing situation – of not knowing, of treatments, tests, and all the particular challenges, debilities, and limitations that this condition brings. For in truth it is only rarely and briefly that it ever seems to eclipse the wonder and the beauty, the sense of mystery and gift. For me, all of you have been and continue to be woven inextricably and prominently into the fabric of this sense. Especially over the last few days, receiving so many posts and messages of well-wishing and support, this sense of being held at many levels has felt so profound, so palpably full of tender love, healing, and grace, I feel it is opening even further my sense of things, of my body, of myself, of human being and cosmos. I am immensely grateful; I want to say thank you, thank you, but feel I cannot possibly thank you enough….

So, in great love and gratitude, in mystery, beauty, and blessing,
Rob

Dear everyone,

I have some difficult news. Although I don’t have all the information yet, I want to share with you what I do have for now.
Following the results of a blood test a few days ago, I was called in at quite short notice for a PET/CT scan on Friday. The scans revealed a metastatic relapse of the cancer, which means lots of (mostly) little tumours have emerged – in the lungs, liver, tummy, and pelvic bone.

My oncologist was reluctant to say what the prognosis is or to conjecture about timeframes. Typically patients with this level of relapse would have maybe one year, he said, “but you’ve already rewritten the book, so we just don’t know what can happen….”

It’s unclear exactly what the next step is for treatment. He advised plugging back in as soon as possible to the NHS for the standard chemotherapy treatment for metastatic pancreatic cancer and then hopefully on top of that base other experimental treatments can be found and tried too.

Medically, that’s about all I know for now. I assume there will be a whole thicket of doctors’ appointments in the coming weeks, and I will of course write again when there is a fuller sense of things. In the meantime there is much to organize, including a house move, as it will no doubt be impractical for me to remain where I have been living for the past months.

For now I just want to say again: thank you so so much for your ongoing kindness, care, and generosity, for your beautiful love and support. It has been truly an amazement to me, humbling me, penetrating deep inside and enveloping me, touching me profoundly and in myriad ways.

Until next time, with so much love and appreciation,
Rob

ps In case anyone is wondering, I will still do my utmost, despite this news, to be at and teach the retreat scheduled at Gaia House in March.

Hey friends, Rob will begin having intravenous chemo tomorrow, and continue every Tuesday thereafter for the next while (though with every 4th week off). He has said he’d appreciate any prayers people felt moved to offer. The treatment is due at 11am (GMT). Should you feel like lighting a candle or sharing a photo or words or an expression of your prayer, you might want to post it below so he can get a visual sense of the web of love we weave for him. But no pressure to share – all prayers of all forms gratefully accepted! A few of us will be sitting on Tuesday between 11-12, and others in the evening, so join in and have a sense of sitting with others if you like xx

Hello everyone,

Just a quick note to say that Rob’s chemo day has changed from Tuesdays to Mondays, for anyone wishing to keep him in mind
After a week off, he now begins again this Monday.

Much love,
Mark

Dear friends,

Having been blessed with the opportunity to help Rob out these past few years in a number of small ways, I am now stepping back and handing on my various roles and responsibilities to others in the sangha. Nic Oestreicher has kindly offered to take on the management of this website, and will also act as a general contact person. Should you have any questions or suggestions, or wish to pass a message onto Rob, you can email Nic at nic@robburbea.com.

I hesitate to say too much more than that, this doesn’t feel like the place to be telling you about me.. but I also realise that by not saying any more I would leave a question hanging in the air for some of you, and risk people perhaps thinking that Rob and I have had a falling out. So only to say: absolutely not! No doubt it will seem strange timing, that I should choose this moment now to take leave of Rob’s mandala, and certainly I can’t pretend to understand all the forces that are compelling me to do so. All I can say is that the call is strong and resolute, and having ignored it for some time I find I’m no longer able to.

I am thankful that I can move away with a peaceful heart, knowing not only that Rob supports me in my decision and blesses me for my onward journey, but more importantly that he will remain in such good hands, in the middle of a community in Devon that manifest such wholehearted love for him and that have between them the time and capacity to make sure he has everything he needs. I wish him, them, and all of you – this entire web of love and support and beautiful people – so so well.

For those of you interested in which direction I’ll be taking from here, the details are not altogether certain, but I’ll be giving myself full-time to climate activism and will most likely base myself in Bristol.

Much love to you all,
Mark

Dear everyone, I know that some of you were aware that I was expecting some scan results today. Unfortunately they haven’t arrived yet, so I’m still waiting and I will write an update as soon as I have some clear information.

Love to you all,

Rob

Dear everyone,

I have been wanting to write an update for some time but things were too confused and unsettled to try to present a clear picture. Then recently there was a delay in getting the results from a scan from a few weeks ago. I saw my oncologist today, however, and she talked me through the radiologist’s report from the scan.

Unfortunately, I have more difficult news: it is clear the chemotherapy treatment I have been on for the last three months is not working – most of the tumours have grown, and there are also new tumours all over. Although she said that this is “slow progression” of the disease, it means nevertheless that they will stop that treatment. There is a standard alternative chemotherapy to try but she does not favour it for me, partly because of my very sensitive intestines, and partly because it is based on a chemo drug I have been taking for more than three years, to which the cancer has probably by now developed a resistance. So we will look to see if there are any clinical trials of other experimental drugs that I may be eligible for, and hopefully some of these will be in locations accessible for me.

Alongside the chemo, I have been trying six or seven complementary/alternative treatments. However, that has not been easy and there have been all kinds of complications and barriers: it’s hard to find trustworthy information (on correct or adequate dosages, for instance) or doctors who will oversee these treatments; or for some or other reason there have been delays getting medicines or medical equipment, etc., etc. (I won’t go into all the details here.) One of the alternative medicines I am taking proved extremely hard to tolerate at the initially suggested doses, affecting my mind as well as my body in what felt like quite devastating ways. So I have lowered the dose considerably. Thankfully I feel now much more myself on this lower dose, but I don’t know – and despite a thicket of heated opinions on the web, it seems at this point no one knows for certain – whether that constitutes an effective therapeutic dose or not.

Probably more than anything else, those high doses of that particular alternative medicine have made the last few months more difficult than anything else I remember until now. But there have of course been other challenges too; I have a lovely and wonderful, mostly new, team of helpers, to whom I am so so grateful, yet even with their formidable help with medical research and household stuff my time has been almost completely consumed with medical things (researching treatment options, doctors and hospital visits and tests, the various treatments themselves, etc.) and also an unusually complicated house move. All this has meant that until the last few days I have not done anything creative, an absence which has felt really hard for me.

Still, I am so thankful that in a week off chemo I was recently able to teach (at least in part) a retreat with Catherine at Gaia House. I am very grateful to her for holding, because of my limited capacities, more than her fair share of the weight of the retreat. And it was profoundly nourishing for my soul to be with that beautiful sangha for a week.

I don’t want to die yet. But I am somehow at peace with that possibility if that is what is coming soon. Knowing the deep emptiness of self, of world, and of time; a sense, almost perplexing at times, that I have received so much inexplicable gift and grace in this life, pouring over me so that I can’t help but bow; a sense too that I have done, or at least tried my best to do, my ‘soul duty’ in this life (“done”, as both Joe Louis and Philip Roth said at the ends of their lives, “the best I could with what I was given”): all this brings peace, soul, and even joy, no matter what happens. What can make it all the more challenging is having to move rapidly between, on the one hand, a more contemplative, receptive, and letting-go relationship with (probably) dying, and, on the other hand, an active, medically researching, relationship with my predicament – one which has to try to weigh up medical options (particularly given the frustration of incomplete information or access) and choose between them, for instance. While on the high doses of that alternative medicine it felt as if my ability to practise well with it all was severely impaired. Thankfully now, I am feeling again the deep and wide fruits of practice past and present, the availability of liberating and soulful perspectives, of blessedness, beauty, and peace.

And, as always, I want you to know how extremely grateful I am to each of you for all your support, care, and kindness. It is part of that sense of grace I mentioned and it touches me deeply. Thank you, a thousand times over.

I will try to write again as next steps become clearer. Until then, know that you live like Spring flowers in my heart and soul, the perfume and beauty of your kindness a blessing on my days.

With so much gratitude and love,

Rob

Dear everyone,

A few members of the sangha gathered together recently to make a recording of the Medicine Buddha prayer to offer as an invitation to anyone who’d like to bring chanting into their daily practice for Rob. The intention of the offering is to feel more anchored and connected into the wider weave of support that we give to each other and to Rob from our different parts of the world. We might imagine Rob being held in a web of loving prayer-song streaming in towards him from different voices and different points across the globe, through all the hours of his days and nights.

The chant was originally offered by Nathalie Bourquin during the closing ceremony of the ‘Roots into The Ground of Soul’ retreat taught by Rob and Catherine at Gaia House in March. Nathalie was given the Medicine Buddha transmission by her Tibetan teacher from the Rigpa Lineage, Gyetrul Norbu Jigme Rinpoche, and we have Nathalie’s blessing to share the prayer here.

There are so many dear hearts wishing Rob well, and it would be beautiful for our voices also to come together in this way. You would be welcome to share or post any reflections you have via Rob’s website as a way of staying connected, in this shared weave of healing and love.

And lastly, please do not feel any pressure to practice in this way, this is just one particular pathway. Prayers of any and all forms are gratefully accepted!

Recording of Medicine Buddha Chant on Soundcloud:
https://soundcloud.com/user-235787779/medicine-buddha-chant?utm_source=clipboard&utm_medium=text&utm_campaign=social_sharing

Context/suggested visualisation:
Medicine Buddha is a healing meditation practice found in Tibetan Buddhism, for physical, mental and emotional ailments and directed towards a specific loved one, towards oneself, our relationships, the earth, and all sentient beings.

You might want to start with some sitting time to settle the body and mind, and establish a motivation towards healing in a heartfelt way, before bringing an image of the Medicine Buddha into your thoughts, alongside an image of Rob, yourself, and/or others you might also wish to include in a circle of healing.

The Medicine Buddha is depicted as having a dark blue (lapis lazuli) coloured body, this being an archetypal colour of healing. The body of the Medicine Buddha is translucent and empty. With his left hand he holds a bowl of healing nectars, and with his right, a medicine plant called an arura. As you chant the mantra you might want to imagine a healing lapiz lazuli colored light emanating from the bowl in the Medicine Blue Buddha’s lap coming into the top of Rob’s head, flowing down and filling his body with light, eliminating all disease, pain and suffering, and the causes of all disease, pain and suffering. You might want to imagine that this healing energy is incomparably more powerful than the most powerful medical treatment, and recite the mantra 8, 21, or 108 times (the recording offers 21 times), continuing the visualisation and mantra for however long feels right for you.

The words/translation of the chant are:
Tayata: do it like this
Om: The undercurrent sound of the universe
Bekhajye Bekhajye: do away with the pain of illness
Maha Bekhajye: do away with the pain of illness and ignorance
Radze Samudgate: the supreme heights: my prayer shall go to the highest and the widest and the deepest
Svaha: I offer this prayer and now relinquish it

Closing:
Choose a dedication that feels right for you to close the practice. One suggestion might be:

By this practice of Medicine Buddha may Rob Burbea, the being for whom we are practicing, and all beings, be free from pain, disease and suffering, and achieve complete and perfect enlightenment in this very life.

. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

May Rob, and all of us, be healed.

Much love,

Nic

Dear everyone,

I am aware of not having written for a while, as I’ve been waiting to get some more concrete news to share with you.

A few weeks ago I had a CT scan to check how things are going, having been taken off chemotherapy at the beginning of April. Yesterday I met with a junior oncologist to get the results. Briefly, the doctor reported “mild progression of disease” since the last scan over four months beforehand: although some tumours seem to have been stable in size, others have grown a little bit, and there are a few tiny new ones. There is a slight collapse of the lungs too.

Given the situation, this is in fact relatively good news (at least, it’s not too bad); the progression of the cancer is quite slow.

It’s hard to say why. Daily over the last months I have been diligently committed to a large handful of alternative treatments. These include: DIY hyperthermia; an experimental high-intensity exercise program (informally following a research trial in Australia); and a whole slue of herbal medicines etc. – some prescribed by a doctor or a herbalist, others self-prescribed. I have had such intelligent and generous guidance and advice from Monica and her small team who have researched these different treatments and possibilities, for which I am tremendously grateful. Yet the fact remains that there is so much unknown, so there has been a significant amount of guesswork involved in deciding dosages for some of the medicines and the frequency of the hyperthermia treatment. It is also not at all clear which, if any, of these treatments have been helpful. It’s simply impossible of course to tell how the cancer would be without one or some of them or their combination. It’s even conceivable that the disease is simply marching slowly on, oblivious to any treatment, conventional or alternative/complementary.

Many of these treatments are not without their challenging side-effects either. That‘s why a few days ago, partly on the advice of a friend, I made a decision to stop taking one of the drugs I had been on since January. I had drastically reduced the dose anyway a few months ago, which helped, but it was still pretty destructive in its effects on my life. Heart and consciousness were made heavy, dull, and quite closed. That was very difficult for me. Under its power I also had very limited capacity to do much of anything in the late evenings and for most of the mornings. Having stopped, I feel I am beginning gradually to recover some openness, lightness, and sensitivity, some brightness, aliveness, and creative spark. A relief from that dark and inert weight…. Retrospectively now there is some grief, some tenderness of heart, at the toll this particular drug took on me. And tentatively my soul is touched by the modest stirrings of a new dawn, that something of a sense of blessedness has returned.

It may be too that I overdid it with the hyperthermia treatment and developed some symptoms of what is known as ‘heat illness’ (apparently a quite serious condition): I clearly blew my body’s thermostat – flushing very hot and cold at all times of day and night, with profuse sweating etc.; developed very painful muscle cramps, and swollen feet, legs, and groin. I also got a severe pain in my back. All these are gradually, I think, returning to normal, though clearly I have to be careful and resume the hyperthermia more infrequently. Thankfully none of these symptoms seem to have been directly caused by the cancer.

Somehow during May and June I managed, in the midst of all this, to record a new series of Dharma talks (a total of over 40 hours of material, I believe ). I am so grateful to have been able to do that, as the treatments themselves are pretty time-consuming, and there were times when this whole daily regime felt pretty gruelling and relentless. The last couple of weeks I have also been able to go in to Gaia House to offer some interviews, which has been a great delight for me.

Future treatment possibilities are unsure at the moment. Despite being told some months ago that there would be lots of clinical trials to choose from, it seems that none of them is very promising, or else I have been told I am ineligible. With considerable ambivalence, I am hoping that it will be possible at some point to get a tumour biopsy done, since testing of a biopsy sample could indicate which experimental treatments might help. At present, although there are many tumours, they are all still too small to get a biopsy. The tumours would need to grow further in order to extract material for biopsy; but naturally I would rather they didn’t grow at all! (A little while ago a surgeon did try to get a biopsy from my liver tumours. Because of their tricky location I had to breathe in certain ways during the operation so that his chances of access were maximized. That meant I could not be sedated as he repeatedly inserted what looked like a very long kebab skewer into my abdomen…. An, er, interesting experience! At any rate, the lab said the tissue he got was not right; despite his surgical skill, he had missed the tumour.) We are still looking for possible experimental and complementary treatments that my be helpful, and of course hope that something will show up and be available to me. In the meantime I will continue with some of the treatments I am doing.

Rereading what I have written above, I realize it sounds as if I am very unwell. So perhaps I should balance the picture: despite these and other somatic challenges, please know that in many ways I still feel pretty okay physically, and often these days people tell me I look well (I do like that!), that it’s hard to tell I am so ill.

There’s so much to say about how I am in my spirit; it’s hard to know what to share. Since receiving the diagnosis of the metastasis and its very poor prognosis – metastatic pancreatic cancer is always (or almost always?) fatal – there have been times I feel as if my being walks in a liminal realm, somehow straddling the two worlds of life and death. I’m not even sure what that means; it’s a curious experience, but profoundly beautiful and full of grace and love. And despite all the limitations now to what I am able to do, I feel grateful for so much – for a little more time to work and explore, to create and discover, to taste the depths of existence and soul, to give and to receive. Always, as well, I am so very grateful to all of you, for your kindness and care, your generosity, your prayers and well-wishing. With all my heart I want to say thank you a thousand times to each and every one of you.

With so much love, gratitude, and blessings,

Rob

We’ll be creating a website and mailing list solely for Rob’s teachings at some point….for now please accept our apologies if this post and the related mail-out are not of interest to you.

Dear Friends,

Rob Burbea will soon start offering regular Dharma Seminars online; you are warmly invited to attend one or several of these in the coming months.

The idea is to give people the greatest possible chance to ask questions about any aspect of practice that feels particularly alive and relevant for them.

Rob currently has energy and enthusiasm to teach; no one knows how long this will last, but while it does it is a precious window of opportunity.

Each week or fortnight there will be a sangha-chosen theme to ask questions about. The group will meet via the online platform Zoom (with the link to join sent out beforehand) and the seminar will be recorded for the benefit of future practitioners.

Each seminar will last for 90 minutes and run on different days and times. They will usually start at 7:30pm and will be offered on a dana basis.

When registering interest for a seminar, please bear in mind Rob’s wishes for those attending:

1. You are very welcome to come to any particular Dharma seminar that Rob leads, but please ONLY come if that session’s particular topic is something you are actually very interested in and engaged with. Please know too that the seminars will be recorded and available, so if you miss one or if that topic becomes important to you at a later date, you can always watch the video later.

2) The topics will potentially range across the whole of the Dharma, not just Soulmaking teachings. Some of you may be feeling at this time that you would like to further your grounding in the foundations of Soulmaking Dharma and that whole paradigm, in which case Rob would suggest that you consider joining Catherine’s online Foundations of Soulmaking Dharma course (Oct 20 – Dec 20 2019; see buddhistinquiry.org for more info). The intention for Catherine’s online course is to give a comprehensive, systematic grounding in those foundations through a guided supporting framework, which Rob’s seminars are not intended to do.

3) If you register for a seminar, please commit to logging on in good time (ie at least a couple of minutes before the start time), and to staying for the duration of the session. Logging in late or logging off early will be quite disruptive for the group.

The first seminar’s theme will be ‘ontology and conceptions of reality in Dharma practice’ and will be held on Thursday 12th September at 7:30pm (BST)

If you are interested in attending this or future seminars, please register your interest by emailing: robburbea.seminars@gmail.com

Love and blessings to you all,
Robert and Wah Wah

Dear Friends,

Right now as I write this, Rob is preparing to teach a three-week jhāna retreat at Gaia House, which begins on Tuesday. I think it is a miracle that he is here to offer this, four and half years after being diagnosed with Stage-4 pancreatic cancer! And it is lovely to see him devoting himself in preparation to do what he loves to do.

He wanted to write an update on this site himself but felt there was too much time-pressure trying to do this before the retreat, and so I offered.

Rob has recently had a chest-abdomen-pelvis scan. We have not had the full report from the oncologist yet, but the GP has let Rob know that the scan does show progression of the disease. It will be a while until we know more about how fast the progression is or what the implications are.

We were expecting that this scan would show progression. Rob has been having to deal with more and different kinds of pain, particularly in the back and the belly, in recent months. Sometimes in the daytime the pains have been quite consuming, and at night they have made sleep even harder to come by. He is in the process of getting the pain managed so that he can hopefully have both enough pain reduction and enough mental brightness and clarity available to be able to work. Sometimes getting that balance right is not easy.

Also, something happened a while back, where he lost the motor signals to his right bicep and parts of the hand. A scan showed that there are no tumours in the head or neck but that there is a lot of “wear and tear” in the spine. So the doctor said it could be due to the vertebrae pressing on the nerves, or that it could be indirectly cancer related. But whichever it is, it is unlikely to get better.

I must say that I am struck by how gracious Rob is with what seems to me quite often like a relentless barrage of different and difficult symptoms. He tells me he is grateful and happy to have a meditation practice . And it has been very inspiring to see him practising jhānas again in preparation for the retreat, and feeling the physical relief, benefit and blessing that is accessible for him through these arts.

One difficult thing for Rob over many months now has been a gruelling routine of doing his best to take care of his body – hours and hours a day of an intense exercise regime and hypothermia (you can read about it in his previous post). Happily now he is going to reduce that in order to be able to give more time to work he would love to do. (He has some more talks – on emptiness, ethics, soulmaking, working with pain, and perspectives on death and dying – that he would love to be able to record after the jhānas retreat.)

So how has he been doing in himself? Pretty well, I would say. It has been challenging to his soul to have that ‘work-out’ routine shaping and consuming his days and weeks, in an attempt to do what he can to stay alive, and without even knowing if it is actually helping. He has been, nevertheless, extremely dedicated to it, as those of you who know him will be able to imagine. Whatever he gives himself to, he seems to give it everything he has!

I spoke to him today and he sounded really well, full of vitality and strength and happy to be going to teach. The access to energy and clarity and will comes and goes quite rapidly but his soul seems well, like he is in the right place. Today he told me he felt a deep peace about dying – a letting go, a beauty, and a sense of eternality. Bless him for his bright and malleable soul.

May dear Rob thrive in all ways and may he have the time to offer more of the gifts that he has been given to offer in this lifetime.

With love,

Catherine McGee

Dear everyone,

I have been wanting to write a health update for some time now, waiting until I had some clear and hopefully relatively good news to share with you. But it seems like those conditions are not quite coming together, so I think it’s best to take this opportunity to just write even the barest bones of an update. Please excuse the brevity – I am also quite depleted energetically.

It’s been just under one year now that I have been off mainstream medical treatment, which has itself brought a measure of welcome relief from that particular onslaught to body and soul. Various signs make it seem clear to me, however, that my health is now in sharper and more obvious decline, that the body is gradually failing.

There has been a diverse and growing collection of chronic and often intense pains – mostly all over my torso, bones, flesh, muscles, front and back – for the last six months or so. Despite their drastically limiting the possibility of sleep, I was able for quite a while, in formal meditation, to find some times of blessed release from the pains. Alas, as the various drugs I am on take their toll formal meditation becomes less and less possible; I nod off many times a day, while trying to study or meditate or even having a conversation. I am assuming this fatigue is from the drugs, but of course it could be from the illness itself, and it could also be from a lack of sleep. Or some combination thereof. At any rate, the windows of opportunity for formal meditation and for work appear to be closing.

I feel so grateful, though, that I was able to teach the jhāna retreat at Gaia House over Christmas and the New Year, and doubly thankful that it was somehow possible to give talks and teachings, despite the pain and despite the practical stretch of it all – thankfully I had from my small band of lovely helpers quite a bit of assistance with the logistics and practicalities of getting to and from GH every day etc. I am profoundly grateful too that I was able to record and finish another series of talks after the jhāna retreat. And a couple of weeks ago I began yet another series but have only managed to record one (long ) talk so far. I am hoping it will work for me to offer the others, but am very conscious it may not be possible.

As I mentioned, there has been a gradual but marked drop in energy levels, physical and mental, over the last while, so that sometimes the simplest things or even just holding the body upright, feel exhausting. Though I haven’t measured it, it looks to me like I have lost a great deal of weight, and my digestive system is struggling a lot: even on my very restricted diet it is palpably (and audibly!) distressed and uncomfortable, most of the time.

I do still remain open to further treatment possibilities. Realistically, however, it seems that none of the three main avenues of treatment-type are viable in my case. Surgery is not an option because I have too many tumours; I have already exhausted all the chemotherapy options, or have been refused others; and it is unlikely that I would be deemed eligible for immunotherapy treatments, even if there were any promising ones on the horizon, due to a history of inflammatory bowel disease. So because of that and because of the pains, my health care has for the most part been transferred now to the local hospice team. They are very nice, but alas my unusual collection of long-term illnesses, the after-effects of the operation I had in 2015, and the many sites of tumour growth seem to have made me ‘a complicated case’, and despite trying six or seven different drugs for the pains, they haven’t yet found something that really helps them. The digestive difficulties may also be too complex in origin to admit figuring out a solution to allow more ease there. Still, I am very glad and thankful that they are there for me with their kindness and help.

In many ways, I suppose, the circumference of my existence has been hugely shrunken. I rarely go out now – the jhāna retreat may, I think, have been the last time I left the house for more than a few minutes – except for a short walk which I try to do every day: I am blessed to have right by the front door of the apartment I am renting a path along a beautiful flat stretch of river. It’s only a few hundred yards but that is enough and I am not sure I could manage any more. There seem too to be many things which I feel a need to take care of as well as I can before I die, and since some of the choices there are not so easy they demand my time and attention.
Yet even now, mostly I do not feel as if the horizons of my existence have shrunken. What calls me deeply calls me still in its beauty, with its intimacies and its distances, and that seems to keep the mind and heart, and the sense of existence and its scope, open, endless even.

But all this has definitely been challenging. My mind is affected by the low energy, and that makes a big difference. And it is hard to exercise a fully helpful relationship with the pain and at the same time try to do something else – work or whatever; too often then the pain will cumulatively over time become quite enervating and even agitating. It is (or at least was, before the mind-wrecking drugs) easier to access some ease and peace with the pain in meditation, when giving it or something else full attention. But that resource has become less and less available. Mostly now I have to rely, I think, on whatever fruits there are from past practice, immensely grateful for those gardens, that orchard.

I still do not want to die just yet – there is so much more for which I want to live, so much more I want to explore, to discover and create, and to give – but I do feel at peace with dying soon, if that is what is coming. (I just wish I could finish these talks beforehand!)

And I am still and as always profoundly thankful to all of you, for all your continuing kindness, generosity, and love, and all the various ways in which you convey that. That affects my sense of existence, surely. It touches and truly humbles me; I am totally certain there’s no way I could get though all this without you.

So, with blessings, huge gratitude, and much love to each and every one of you,

Rob

Dear friends, students, teachers and family of Rob,

Dear Rob is at home in bed. For some days now he has been wanting to offer you an update. I hope he will still be able to do this, but unfortunately the opportunities for doing this are becoming fewer and fewer, even with our help. I know that many of you are aware that his health is declining and feel this keenly. So in case Rob doesn’t get the chance to formulate something himself I want to let you know what is happening, out of respect and appreciation for your great love and care.

Dear Rob is approaching the threshold of death.

These last weeks have been extremely tough for him physically. He is being well taken care of. There are two of us with him all of the time now and he is being well supported by the district nurses.

It has been almost five years since Rob was diagnosed with pancreatic cancer and through those years of treatments and pain he has continued to offer the beautiful gifts that he has been given to offer. And now, this beloved man is coming to the end of his life.

I am coming downstairs now to his bed to see if it is a good moment for him to dictate some words for this update. ‘Read me what you have so far’ he says. I have to listen closely to make out his words. I begin to read to him. And every word of what follows, he tells me that he would like you to know.

Some weeks ago Rob started to notice that he was losing his balance and bumping into things. The sense was that his world was spinning and then he would vomit when he opened his eyes. He said he could not sense body parts in relation to other body parts or his body’s orientation in space. After a mis-diagnosis of labyrinthitis, and trying the treatment and rest prescribed for this, Rob eventually decided to go to hospice for some tests. A brain scan showed that the cancer has progressed to the brain and most notably to the cerebellum. This offered an explanation for the symptoms he was experiencing and he began taking steroids in the hope that it might help reduce the swelling and improve the symptoms.

Sadly, Rob has not experienced any benefit from the steroids except perhaps a slight increase in appetite, and he is experiencing an increase in symptoms related to having tumours in the cerebellum. The most difficult one is that it is very difficult to find any ease for his poor head and often even micro-movements of his head can disorient his sense of locatedness and make his world swim and then make him very sick. There is also breathing difficulty that comes with this. He is experiencing involuntary movements in his left arm and leg and his right arm is having trouble accurately sensing where things are, for example trying to place a spoon in his mouth. His speech is slurred and his body has trouble maintaining balance. It is very difficult and there is not much respite except in sleep and dozing.

The one surprising thing is that Rob has almost none of the multiple physical abdomen pains that he has had to work with and that had become worse in the last year. This is a big change for him. In some ways that sounds good. However, from what he says, these new symptoms are much more difficult. He could take more morphine and therefore have the chance to doze more often. But so far he hasn’t. He has even come off the strong anti-sickness medication because it made him too sleepy. Despite all of these difficult symptoms dear Rob wants to be awake enough to keep going with his work. At times he has, with a lot of help, been able to dictate a few new insights which form a rudimentary structure for a new talk, drawing together such themes as Buddha Nature, telos, emptiness, Eros and God.

‘Would you like to add something?’ I say to him. He pauses and I can’t completely tell if he is drifting off or thinking. And then he adds this short piece:

“If this is the last update, please know how much I cherish and am touched by your kindness and love which stays with me wherever I go. Like all things associated with metta, I know that it can’t be diminished by moving back and forth between us. And so it does… “

Rob is still at home. And he is lying quite still in his bed.
He has not drunk anything for a few days now, nor spoken any words.
He appears to be calm and able to rest. And his dear body is coming to the end of what it can sustain.

Much of the busy hands-on caring of the last weeks is no longer needed. And in this hush the sounds of birds and the river fill the room, and we listen for the changing rhythms and tides in Rob’s breathing. Reading the signs that may let us know when his last breath is close.

These last 7 weeks have been a hard road for Rob with new challenges showing up daily. And as each new hurdle presents itself we have seen that Rob has soon met it with humility and very often with grace too.

May he be safe and protected and may all his dis-ease be soothed.

with tenderness

Catherine, Kirsten, Nic, Sarah, Lea and Jane.

Dear friends,

It is with great tenderness that we are writing to inform you that Rob has died.

In the last days he was very still and his breath just got quieter and quieter. And then just before sunrise on Thursday the 7th of May his life was let go of, ever so gently.

Go well beautiful soul. Thank you for sharing your gifts so generously, thank you for everything you have brought to this world.

Go well dear friends.

With love,

Catherine, Kirsten, Nic, Sarah, Lea and Jane.

It is clear that Rob was very deeply loved by many people, and that he will be sorely missed.
We hope that all of us can find ways, that are right for us, to honour and celebrate the unique beauty of his life, to cherish the particular ways he has touched us and to care for the sense of loss that Rob’s death may leave for each of us.
In time there will be a funeral for Rob, and we will let you know how you might participate in that if you should wish. But meanwhile dear friends, if you wish to gather to be with others who love Rob, we have included an invitation for you below. You would be most welcome.

Invitation from Friday 8th May for seven days.

Shiv’ah

Rob felt a strong connection to his Jewish roots. One of his students, Keren Sheffi, very kindly offered to hold Shiv’ah, a week of remembrance, loving and mourning together. This will be a virtual space where everybody is welcome to join to cry, laugh, pray, meditate, share stories about Rob, his teachings, and listen to the words of others.

The space will open every evening at 6pm UK time from tomorrow (Friday 8th May), and stay open each evening until the last person leaves.

It is not a formal session but an open gathering; you’re very welcome to arrive whenever you want and stay for as long as you want. The link is:

[Zoom link removed]

If you would like to come please read these ideas/guidelines that will help us convert this traditional gathering to an online one.

Everybody is welcome to be here
Everybody is welcome to speak, or to just listen
When speaking, if there are many people in the room, be brief, only speak once and don’t respond to others
When listening, if it gets too much, it’s ok to turn off the volume and just feel the togetherness.

In the spirit of the ebb and flow of traditional Shiv’ah it’s fine to arrive at any hour for any length of time, or to stay for a while and then log off and come back later. It’s also fine to move around, be off-camera, or get yourselves something to eat or drink on-camera – it’s a sacred but informal social gathering rather than a ceremony.

Dear friends,

It has been so lovely to be with many of you on zoom during this last week in the Shiv’ah with Keren, remembering dear Rob and sitting in such sweet presence together.

We know that many of you would have loved to be able to attend Rob’s funeral, but as you probably know, funerals and burials in the UK are limited to ten people, due to the Covid risk and regulations. We are sad that this is the case right now.

Still, we would love it if you could join us during the day. Here are three ways that you can participate and contribute on May 20th. We do hope that these offer a way for your love and presence to become an important part of weaving this day together in honour of Rob.

Invitation 1 – A Stone for Rob

If you wish to give your presence, prayers and blessings a physical form please send a small stone. Leaving a stone on the grave of a beloved one has a long tradition. And on the 20th we will place your stone along with stones from many different hearts and lands as part of the ceremony.

Please send your stone to:
“Stone for Rob”
3, The Mill
Staverton
Totnes TQ9 6FE
UK

Invitation 2 – Funeral service and burial – by Zoom
Sharpham Natural Burial Meadow

You are invited to attend Rob’s funeral service and burial at 10.45am BST (current UK time) on Wednesday May 20th.

Please arrive at 10:45am for an 11 O’clock start. The services will last up to two hours.

If you plan to come please visit [link removed] – where by Tuesday 19th we will post the zoom link for the funeral, an order of service and offer a few other thoughts about the day. *Please do not post this link on social media*

Invitation 3 – Shiv’ah

You are invited again in the evening at 7.30pm BST (current UK time) to Shiv’ah held by Rabbi Jonathan Wittenberg from the New North London synagogue.

Shiv’ah will start at 7.30pm BST (current UK time) and last for about an hour.
Please arrive in time for a 7.30 start.
This will be different from the Shiv’ah offered in this last week and if you come please stay for the duration.

[Zoom link removed]

Wishing you well dear friends,
and in our shared love for Rob,

Catherine, Kirsten and Ruth