This website has been created on behalf of Rob Burbea. There are so many of us around the world who care deeply for Rob and we offer this page as a way to connect with each other and stay updated as his health situation unfolds. We’d really welcome your input, so please do see this as a place to share your thoughts and inspirations.
If you have any questions or suggestions please email firstname.lastname@example.org
For details on the daily/weekly sit see the post from 23rd August.
For teaching news and updates go to the Teachings page.
And for those of you who asked or for anyone who might be interested, here’s a selection of Rob’s music.
27th May 2018
Medical update from Rob show/hide content
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,
2nd March 2018
Medical update from Rob show/hide content
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,
ps here is a fun photo from the trip to London
2017 show/hide posts
30th November 2017
Medical update from Mark show/hide content
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 –
29th October 2017
Medical update from Rob show/hide content
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,
14th October 2017
Soulmaking Sangha Gathering show/hide content
Just wanted to let you know about a possible soulmaking sangha gathering with Rob and Catherine in February 2018. If you’d be interested in coming you can find more info on the Teachings page.
Lots of love,
6th September 2017
Medical update from Rob show/hide content
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,
5th July 2017
Post from Mark about an upcoming retreat with Rob and Catherine show/hide content
Just wanted to let you know about a retreat that Rob and Catherine are leading with Freely Given Retreats in February 2018. I won’t put all the blurb here, but I’ve just put the information on the FGR site, and made the application form live. You can find all the details here: www.freelygivenretreats.org/retreats/
I’ll soon be creating a separate website for updates on teachings and other non-medical matters (which you can then sign up for separately if you’re interested) so please excuse for now this sort of information still coming via the ‘medical’ page.
Lots of love,
10th May 2017
Teachings update from Mark show/hide content
Just to let you know that a series of talks Rob recorded earlier in the year is now available on Dharmaseed. If this sounds of interest to you, please first take a look at the Teachings page for important information about how they fit into a larger body of material.
Lots of love,
18th March 2017
Medical update from Rob show/hide content
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,
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.
14th February 2017
Brief (non-)update from Mark show/hide content
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 –
2016 show/hide posts
20th December 2016
Medical update from Rob show/hide content
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,
18th November 2016
Post from Mark about the Alchemy of Desire retreat show/hide content
Please check the teachings page (if you’re interested) for a brief post about the upcoming Gaia House retreat “Of Hermits and Lovers: The Alchemy of Desire”, with Rob and Catherine McGee.
Lots of love,
20th October 2016
Medical update from Rob show/hide content
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,
2nd October 2016
Teaching update: New recordings available show/hide content
17th August 2016
Update from Rob show/hide content
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,
ps here is a fun, fuzzy photo, with feathers…
29th June 2016
Medical update from Rob show/hide content
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,
21st May 2016
Post from Mark about the Re-enchanting the Cosmos retreat show/hide content
Please check the teachings page (if you’re interested) for a brief post about the upcoming Re-enchanting the Cosmos retreat at Gaia House with Rob and Catherine.
Lots of love,
5th May 2016
Update from Rob show/hide content
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,
1st April 2016
Fundraising update and thanks from Rob show/hide content
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,
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.
12th March 2016
Donating to Rob – A Callout to Sangha show/hide content
We would like to let you know that as Rob’s situation unfolds it has become clear that further treatment is needed, beyond what the NHS can offer. These treatments are hugely expensive and vastly exceed Rob’s financial capacity. We are therefore reaching out to everyone in this community in an attempt to raise the necessary funds. Please visit the new Donating page where we’ve laid out these changing circumstances in full and explained the various ways in which you can donate. Thank you so much 🙂
With ongoing love,
12th February 2016
Teachings update from Mark show/hide content
Lots of love,
25th January 2016
Update from Rob show/hide content
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,
2015 show/hide posts
22nd December 2015
Update from Rob show/hide content
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,
(ps here are a couple of photos from today)
25th November 2015
News from Mark about recent teachings from Rob show/hide content
10th November 2015
Update from Rob show/hide content
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 at email@example.com.
Thank you again so much for all your beautiful and touching expressions of kindness and support.
With love and blessings to all,
26th October 2015
Update from Mark show/hide content
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,
1st October 2015
Update from Rob show/hide content
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,
15th September 2015
Update from Catherine show/hide content
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.
9th September 2015
Health update from Rob #2 show/hide content
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.
7th September 2015
Visiting Rob show/hide content
So thank you for your understanding in this 🙂
6th September 2015
Beginning the recovery show/hide content
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 🙂
5th September 2015
Happy Birthday Rob! show/hide content
… 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…
4th September 2015 (2)
Success! show/hide content
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.
4th September 2015
Rob is in theatre show/hide content
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.
Giving dana to Rob show/hide content
** 12th March 2016: There is now a separate Donations page on the website, with up-to-date information.
Some people have expressed a wish to offer financial support to Rob, which is very much appreciated. A fund has now been set up to receive donations and this money will be used to cover any costs Rob incurs as a result of his illness.
- If you wish to make a bank transfer yourself, the details for the account are as follows:
|Bank Name:||The Co-operative Bank||Account holder:||R J BURBEA|
|Sort Code:||08-93-00||Account holder address:||Gaia House|
|Account Number:||89496800||West Ogwell|
|IBAN:||GB91 CPBK 0893 0089 4968 00||Newton Abbot|
|BIC / SWIFT:||CPBK GB 22||TQ12 6EW|
- If you have a PayPal account you can direct money as ‘friends/family’ to firstname.lastname@example.org. As long as the funds come straight from your account, or the bank account linked to it, this will not encounter any charges if sent from within the UK. From outside the UK the charge is minimal.
- The PayPal button below will also allow payments via your PayPal account and also credit/debit cards, but a charge of up to 5% will be taken from the amount donated.
- Alternatively if you’re outside the UK it seems xe.com is a very good way to transfer funds. It requires a little more time to set up than PayPal but doesn’t charge fees either for the transfer or the currency exchange.
Thank you all!
Meditating together for Rob show/hide content
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.
Catherine McGee (from Gaia House)
20th August 2015
Health update from Rob show/hide content
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.