“Surviving Sarcoma” – Leeds Event, July 2019.

  • On Wednesday this past week, I was up in Leeds, representing GIST Support UK at a “Sarcoma Survivorship” event, hosted by the specialist nurses from St James hospital sarcoma unit – one of the specialist sarcoma units endorsed by NHS England for the treatment of sarcomas.

“Sarcoma” is a group of rare cancers, alongside the more familiar carcinomas, lymphomas, melanomas and others. The sarcoma group in turn, includes a wide range of different cancers, including GIST  “GastroIntestinal Stromal Tumour”, which has been part of my life the past five years. So, I was there to contribute – and also to learn.  I offer now some thoughts, on what I learned, or had not previously fully understood.

After cancer, life does not return to “normal”.

Right at the very beginning, I was caught out, in an opening ice-breaker quiz. One question asked something like, “Suppose you have been treated for cancer for some time, and the day comes when your doctor tells you that you are now NED (No evidence of disease), you no longer need treatment, and life can return to normal. Should you be pleased?”

My response was, “Yes of course. Who wouldn’t be pleased that treatment is no longer needed?”, but that completely missed the point. Of course it’s good to be NED – but life after cancer can never go back to “normal”.  There will always be some risk of recurrence, so regular physical monitoring may be required, and there will always be some emotional impact remaining.

For this reason, one entire presentation was devoted to a program run by St James for continuing care, after the end of formal “treatment” for cancer. Similarly, several speakers stressed that they exist to serve anyone who has been affected by cancer – ever, now or in the past.

Cancer Care Must Be Holistic.

It was notable that in the entire program, only one contribution dealt with physical care – and that was by a specialist sarcoma physiotherapist, on the importance of regular exercise (which contributes to mental health h as well as physical). Most of the remaining speakers, from Leeds Cancer Support, Sarcoma UK, Maggie’s Centre (and myself), spoke primarily about things like emotional support, quality of life interventions – and financial planning (which is important to ease anxiety).

Carers Need Support, Too.

As patients, we can usually access support and services from a wide range of specialists: GP’s, oncologists, surgeons, nurses, pharmacists and more – as well as our carers (usually, family and friends). Who can our carers turn to for their own care? They too, carry a heavy burden of stress, and do not have any obvious sources of help.

Here too, the speakers all pointed out clearly that their services are available not only to patients themselves, but also to their family or other carers. Even the opening quiz, right at the beginning, included this as a question: “Can patients’ family members who are finding things hard, get help from a sarcoma nurse?” Answer: Yes – they are there to help family as well as patients.

Specialist  Nurses are Awesome!

The evening reminded me once again, of just how valuable it is to have specialist nurses to draw on, especially when first diagnosed. I clearly recall how very thankful I was right at the beginning of my journey, to have access to two superb nurses, who were constantly present to offer reassurance and support, and information to guide me through the confusing and bewildering steps I was going through as I was beginning to navigate my way through the process and physical environment.  It was obvious to me, that St James have an equally valuable team of nurses available, both within the sarcoma centre, and also working in the various satellite support units.

GIST Support UK – Mission Accomplished.

I was there primarily to represent and promote our own charity, with a display table of our usual posters and booklets. I spoke with several GIST patients, some of whom had never heard of us, but also with some who are already on our Listserv email group and have attended a patients’ meeting. Others took leaflets or booklets without talking directly with me. I left some of the remaing flyers for our own Leeds meeting with the event organiser, who is hoping to attend herself, and promised to display and distribute them. I think we should have a good local turnout for our patients information day on Octover 4th.

In addition, I delivered a short presentation on my own GIST journey, which (as far as I can tell), was well received. Certainly, I had some good direct feedback – one person described it as “amazing!” My slides (in Power Point format) can be accessed by following this link:

My GIST Journey

Three Years With No Stomach.

Three years ago today, I was in the Royal Free Hospital for surgery to remove a massive GIST (“GastroIntestinal Stromal Tumour”), and with it, all of my stomach and spleen.  So – how has life been, with no stomach?

Prior to surgery, I had been warned that I would have to make substantial adjustments to how I ate (and drank). I was told, on all the websites I checked and on-line support forums. that I would be able to eat adequately, provided that I took only small meals at a time – preferably, six small meals instead of the usual three a day, I was also advised that it would be helpful to have a steady supply of something like nuts to nibble on between meals. Two different nutritionists suggested I should avoid drinking anything at all at the same time as taking my meals, and not to drink anything fizzy – no  carbonated drinks (eg, coke, or mixers), and no beer.  I was also warned that initially at least, there would have to be a gradual adjustment to eating at all – starting with liquid foods, going on to semi-liquids like smoothies, progressing slowly to soft foods, and taking time to get to the full range of conventional solids.

In addition, the standard advice is that after a gastrectomy, there is a real risk of something called the dreaded “dumping” syndrome if ever I ate too much, or too quickly.

In practice, it’s been much easier than that.

The first surprise was that the first week after surgery was even harsher tha expected. Instead of starting on a liquid diet, I was on nothing at all – “nil by mouth”. I was allowed not even water: the closest I could get, was a wet sponge to dampen my lips. Later, earnest entreaties got me permission to take some water into my mouth, provided that I spat it out without swallowing.  However, once I was allowed to start drinking from the eighth day, to my surprise I was told that I could immediately begin eating “soft” foods – and that did not mean semi-liquids, but included things like pasta, a bean and tuna casserole, mashed potatoes and scrambled eggs.

After returning home on the tenth day following surgery, I initially avoided things like toast and roast potatoes, but  it didn’t take long before I was eating the full range of foods.  I started out trying scrupulously to stick to the recommended six small meals a day, but soon found this to be impractical. Instead, on the basis that my usual breakfast and supper are in any case small meals, all I did was adjust my midday lunch, eating half at lunch time, and the rest at mid-afternoon.

I started out avoiding all drinks together with meals, and avoiding fizzy drinks completely. In time however, I found that this precaution was unnecessary. As long as I drink slowly and not too much at a time, I now find that I can easily take any fizzy drinks I like, and also enjoy a drink with meals.  With time, I have even found that on occasion I can eat quite a substantial meal at a time. Although when at home I divide my usual meal into two portions, when away from home and this is not feasible, I can eat something close to a conventional full portion (but still avoid having three courses).

I have also been fortunate in never having experienced anything like the dreaded “dumping” syndrome.  The only problem I’ve yet experienced on the rare occasions when I’ve eaten more than I can cope with, has been a lttle mild discomfort. All I’ve needed to at those times, has been to lie down  and rest for just a few minutes (no more) and that has invariably cleared it.

Other than the small adjustment I’ve made to eating, I have continued with daily imatinib tablets (a form of oral chemotherapy, taken with my breakfast) to guard against a recurrence. Because of the sheer size of my tumour (26cm x 19cm), I’ve been told I will likely remain on the medication for life, Here too, I’ve been fortunate. Some people have difficulty just tolerating the drug, others experience some nasty side -effects. I’ve never had any difficulty taking it, and although I do have a range of side-effects, these are fairly mild and do not particularly interfere with my daily routine.

So, my experience has been quite different to the warnings given in the relevant websites (GIST SupportUK and others). Does this imply that the standard information is flawed – or am I just an “anomaly”, as one respected GIST colleague has said to me? I don’t know – but I do suggest that for anyone else awaiting a gastrectomy, take note of the standard advice, make all the preparations and adjustments recommended.  Understand though, that we all respond differently to surgery and to medicaion. Your experience may turn out to be a pleasant surprise, as it has been to me,.


The Myth of “Cancer”: Big Fleas, and Littler Fleas.

Big fleas have little fleas
upon their backs to bite ’em.
And little fleas have littler fleas
… and so, ad infinitum

-Ogden Nash

This is not to suggest that “cancer” does not exist – obviously it does, as I know very well from personal experience. However, it is a myth that “cancer” exists as a single syndrome.  A few weeks ago, I read a newspaper opinion piece by Simon Jenkins, arguing precisely this point: we should stop talking about “cancer” as a generic, and instead speak of a particular cancer.

The more I learn about cancer, with particular reference to my own variant, a GIST (GastroIintestinal Stromal Tumour), the more I am reminded of the above verse by Ogden Nash. Just as “big fleas” have “little fleas”, so “cancer” is an umbrella term for a range of sub-types: carcinomas, lymphomas, and more. Then just as “little fleas” have “littler fleas”, so these divisions in turn have smaller sub-divisions: sarcomas for instance, which I know best, include GISTs, but also bone sarcomas and other soft-tissue sarcomas.  As for “ad infinitum”, GISTs too have a range of variants, based on the specific mutations, such as the c-kit mutations Exon 11 (mine), Exon 9, Exon 13, Exon 17.  In addition, there are a range of mutations to the PDGFRA gene, collectively known as “wild type”, because they are not so easily classified, But this term is itself misleading, because “wild type” is not a single GIST type, but an umbrella term of its own.

“…… and so, ad infinitum”.

Can we now stop thinking in terms of “cancer”, and be more specific with our language?




Life With No Stomach.

Two years ago this week, I was laid low in the Royal Free Hospital (Hampstead), recovering from surgery that removed all my stomach and spleen, together with a massive sarcoma tumour, a stomach “GIST”. I have described before the diagnosis and process leading up to the surgery, and the surgery and stay in hospital. It’s time now to tell of life without a stomach.

The short answer is life is good – almost back to “normal”, before surgery, and certainly easier than I had been led to expect. Prior to surgery, I had been warned by colleagues in the GISTUK Support group, and by on-line information, that after a complete gastrectomy I should expect an extended, gradual adjustment to eating with no stomach, progressing slowly from a liquid diet, through semi-solids to solid foods. I was also advised by two different nutritionists, to avoid drinking with meals, and to avoid at all times, “fizzy” drinks of any kind – such as beer, colas and mixers for spirits. I was also warned that I would need to adjust my daily diet from three meals a day, to six – just half a meal at a time. I was also warned of a most unpleasant “dumping” syndrome, that might make life really unpleasant at times.

In fact, it’s been much easier than that. Even while still in the hospital, I went directly onto “soft” solids, after a week of nil by mouth regime (not even water). Instead of six meals a day, I have four – breakfast and supper are in any case small meals. For lunch, I serve a standard meal but eat only half, and put aside the rest for later, in mid-afternoon. Initially I avoided and drinking at all with my main lunchtime meal, but now find I can happily get away with a whisky and soda before the meal – taken slowly, and nursed through the meal instead of water. I have never experienced any hint of dumping.

I have experienced only minor impacts on my diet. I started out anxious to avoid things like toast, with its hard crusts, and replaced it for my standard breakfast with yoghurt or cereals. However, I soon found that I had developed not quite an allergy, but certainly an aversion, to dairy products. I have since got around this problem by using lactose free milk, which is standard milk wiht the lactose filtered out, and is freely available in major supermarkets, (and has the fringe benefit of a much longer shelf-life).

Conscious of the need to limit drinking and avoid fizzy drinks altogether, I initially avoided all drinks with meals, and later replaced my previously accustomed g&t before lunch with a small whisky and water (to avoid the fizz in the tonic). Later, I replaced the water with soda, and now get away comfortably with a standard scotch and soda.

The only remaining difficulty with diet, is when eating out. If it is feasible to ask for a doggy bag I do so – putting this in the same position of my regular habit of dividing my main lunch meal in two. Where this is not feasible, I may order just a starter (sometimes two starters, instead of a starter plus main), or  simply order a standard meal, and send back what I cannot eat. (Some people recommend ordering from the children’s menu, but I have not yet found this realistic). When selecting from a buffet, for example on conferences, it’s easy – I just limit what I take – and put aside some fruit, for later.

So eating and drinking, which is widely discussed as the major adjustments to life without a stomach, have not been the difficulty that I anticipated.

A bigger problem for me, has been that of fatigue and loss of energy. I understand that this is due to a reduced ability to produce vitiman B12. To compensate, I was advised to have a B12 injection every three month. This certainly helps – I am very conscious, before the due date, of a clear decline in energy, and a revival quite quickly after I’ve had it. To complement the value of the injection, I now also take regular B vitamin supplements, in the form of energy drinks. Even so, I am conscious that I am much lower in energy, and tire more easily, than before surgery. (This loss of energy is mental, as well as physical).

I continue to take the targeted cancer drug imatinib, which I was put onto initially to shrink the tumour. Now, I stay on it as a precaution to prevent regrowth. The standard regime is to stay on the drug for either three or five years, and there is a notable academic debate among the specialists, on which is more appropriate. When I saw my oncologist last week (Dr Seddon at UCLH a noted expert in the field), I noted that it is now two years since surgery, and asked how much longer I would stay on the drug. I was expecting the answer either one year more, or three – but was shaken to be told that it was more likely to be indefinitely. The reason for this is that the sheer size of the tumour, which in itself classifies it as “high risk” of recurrence, also meant that it had been squashed up against several  other organs. Thus, she said, it was entirely likely that although the actual surgery was clean and entirely successful, there could be specks of cancerous cells left behind on those organs.  I need to stay on imatinib to discourage the growth of metastatic tumours.

The problem with that, is that imatinib and other targeted cancer drugs are not effective indefinitely. Sooner or later, there comes a point when they simply stop working. When that time comes, as it will, there will be a move to the standard second-line drug, sunatinib, which is stronger – and has correspondingly more difficult side-effects. That too, will in time lose it’s effectiveness, and will be replaced by a still stronger drug, with still stronger side-effects. After that? There could be a fall-back on clinical trials of new drugs, or less conventional palliative surgery techniques – or whole new therapies, not yet developed.

Long term, the prospects are thus not exactly cheery. However, it is not the long term that matters. For now, what is important is that in spite of everything, life without a stomach continues pretty much as normal, with only minor adjustments. It’s also important to note that new drugs and other therapies are constantly being tested, or even coming on stream.

To quote Dave Gorman, even without a stomach, life is good-ish.




Funding Breakthrough in GIST Cancer Treatment

Good news reported in a release by GIST Support UK:


Today GIST Support UK, the key charity specifically focused on combating GIST  (gastrointestinal stromal tumour), celebrated the NICE decision to approve regorafenib, a life extending drug, as a third line treatment for GIST cancer patients in England, ensuring that they have access to the same key drug as provided to patients in Scotland and Wales.

Nic Puntis & Jayne Bressington (on behalf of GIST Support UK) said:

“We welcome the NICE decision to recommend access to regorafenib as it offers greater long-term treatment options for patients with GIST.  Importantly, GIST patients in England will now have routine access to this important treatment, joining patients currently living in Scotland and Wales.

Thank you to everyone who worked so hard to review and approve regorafenib.”

GIST (Gastro-Intestinal Stromal Tumour) is a rare form of cancer which does not respond to the more usual cancer treatments of radio- or chemotherapy. Before the introduction of specialist drugs, the only recourse was surgery. With the more recent introduction of TKI drugs (ie, Tyrosine-kinase inhibitors), options improved.

The first line of treatment, which I have been on for three years now, before and after surgery last February, is imatinib (UK trade name Glivec. However, this is not effective for all varieties of GIST, and even where it is effective, there often comes a point where it is no longer so. In such cases, the second line of treatment is a drug called sunitinib (trade name Sutent). Where this too is not effective, or loses its effectiveness, the third line of treatment is regorafenib.

Until now, only the first two, imatinib and sunitinib, were approved for NHS funding in England under NICE rules.  Regorafenib has been available only under the special arrangements of the cancer drugs fund (and even that was achieved only after intensive lobbying by GIST Support UK).

Today’s welcome news means that in future, this life-saving drug will be more securely available.

Related Posts

GIST Support UK: Cardiff Conference

GIST and Imatinib in the News

One year on from GIST surgery: (1) Diagnosis and early treatment

One year on from GIST surgery: (2) Surgery


GIST Support UK: Cardiff Conference

I spent yesterday in Cardiff, for a patients/carers meeting with GIST Support UK.

GIST (“Gastrointestinal Stromal Tumour”) is a particularly rare form of cancer, which I was diagnosed with just over three years ago.  Because it is a sarcoma, not the more usual form of cancer, carcinoma, much of what is popularly  understood by the term “cancer” simply does not apply. Because it is so rare (even most GP’s and nurses have never heard of it), it really needs to be treated in specialist sarcoma centres. For all these reasons, people who have been diagnosed with GIST are in particular need of support – to meet and hear from others in similar situations, and to keep abreast with the latest developments in research and treatment for the condition.

GIST support UK provides this support in different ways. Most obviously, it has a website which summarises the key information currently available – and lists the specialist centres with appropriate expertise in treating the condition. It also has an email Listserve group, where people with GIST can tell their stories, ask for or offer help and advice, or report on new developments from the world of science. We also host a patients’/carers’ meeting twice a year in different parts of the country, where people can get this personal contact face to face – and get reports on the best current knowledge, from experts in the field.

We do not simply sit back and receive the result of research – we also contribute to it, directly. In conjunction with the Royal Marsden, we host a GIST tissue bank, where tumours that have been surgically removed from people with GIST, are stored and available for clinical research. We also directly fund researchers working in the field, and pay for patient advocates to participate in academic conferences, contributing the voice of patient experience. It is notable, for instance, that one recent academic paper on the current best practice by leading UK researchers, included in the acknowledgements, the value of contributions by two of our leading members.

I came across the website from a Googe search immediately after my initial diagnosis. I then signed up to the Listserve group, which I have both learned from and contributed to, and have since attended three of the patient meetings, to my immense benefit. I was flattered at yesterday’s meeting to be invited to join the board of trustees.

All of this good work, inevitably costs money., for which we have an active fundraising team. I am not a great fundraiser myself, but from time to time I will be sharing information on GIST Support UK fundraising activities. When I do, please consider contributing.

Related posts:

GIST and Imatinib in the News

This article from The Times describes the remarkable drug that I’ve been taking for my (very rare) form of cancer – GIST, or Gastro Intestinal Stromal Tumour.

Fortunately for me, I’m in the sub-group with the KIT gene that the article says does particularly well on imatinib. My experience was that I was originally diagnosed almost three years ago with a massive tumour (26cm x 19cm) wrapped around my stomach. That was considered too big for surgery, and this particular form of tumour does not respond to either radiation or conventional chemotherapy, so I was put onto imatinib to reduce its size.

All I did was take one tablet daily with my breakfast. Some patients experience a range of nasty side -effects, but I was lucky: side-effects were minimal, with very little impact on my daily life. Regular 3-monthly scans immediately showed that the drug was having the desired effect, with definite shrinkage. However, there came a point where shrinkage ceased, with the tumour down to 19cm x 15cm: still big, but much more manageable. At that point, surgery was scheduled for February last year (2016).

Following surgery, I continue to take the drug, now to guard against regrowth. Every six months, I have a CT scan to check that indeed there is none. The last, in April, still showed all clear. The next scan will be in October – when I hope, that will still be the message.

Drug turns cancer from deadly disease to manageable illness

Cancer could become a manageable chronic disease like HIV for many patients, according to scientists running a drug trial.

Researchers found that a drug for advanced cancers of the gut and stomach kept a large minority of patients alive and mostly symptom-free for at least ten years after the start of the trial.

Experts said the “remarkable” discovery was a foretaste of a future in which people diagnosed with aggressive tumours that would once have been a death sentence may be able to resume their old lives for many years.

Since the turn of the millennium doctors have widely adopted a new class of chemotherapy known as targeted drugs, which attack a particular gene or protein that is known to be essential for the cancer’s development.

However, these medicines tend to be costly and usually extend the lives of patients by only a matter of months as the tumours mutate to resist their effects.

Full report: The Times & The Sunday Times

Related posts:

One year on from GIST surgery: (1) Diagnosis and early treatment

One year on from GIST surgery: (2) Surgery

“With a little help from my friends..”

Scrub that.

Not ” a little” but “a lot” of help from my friends.

When I wrote recently about my late wife’s struggles with mental health, and her final, nearly completed, suicide attempt a friend who had known us both well at that time, wrote to me, saying,

“..how you coped with it I will never know!”

My response was

“how I coped with it” – one day at a time, and with a lot of help from my friends.

I wrote previously about what was (almost) the end of our difficulties together, but there was also the beginning. In some ways at least, this was almost more difficult, because it was all so new and unfamiliar terrain, and because the children were so much younger, aged just 18 months and three years.  I could not have come through that time without extensive support from both friends and family.

This support was crucial again, through all the crises during the marriage, and at its end. After the marriage finally broke down, there was the help of a support group for divorced people: I was at home one afternoon, when a stranger appeared at the door. She was the Polish mother of a daughter’s classmate, and instructed me, forcefully, “You come Divorce Workshop Group!” So I did – and found it immensely valuable, for the hard information I gained, and for the friendships formed.

Later, when I moved from to Johannesburg to Cape Town and finally came out to myself and then to others that I was indeed gay, again I found that simply meeting other gay men, and forming friendships with them, was helpful – as was my membership of a gay/lesbian support group, “Gasa Rand” (i.e., Gay Association of South Africa, Witwatersrand region). I joined their committee and introduced an adaptation of the tools used by the DWG, that I had found so helpful for divorced people in Cape Town. These proved to be equally successful, in supporting gay men and lesbians in Johannesburg.

Still later, after moving to London, I was faced with the challenge of coping with living once again as a single gay man, and attempting to reconcile the apparent contradictions in being both gay, and Catholic. During this time, the support, resources and regular LGBT-affirming worship services of what were then known as the “Soho Masses” were yet another lifeline.

More recently, in my journey with GIST, it’s been the GIST Support UK who have been invaluable, with the information on their website, the listserve email group, and their biannual conferences.  Conversely, during my major surgery last February to remove the tumour and with it my stomach, I was acutely conscious of the support and prayers of this GIST support group, but also of my LGBT friends in queer faith communities worldwide, as well as my local parish community.

I am now more conscious than ever, that in times of difficulty, I “get by with a little a lot of help from my friends,”

One year on from GIST surgery: (1) Diagnosis and early treatment

A year ago today, I checked in to the Royal Free Hospital Hampstead to have a stomach GIST removed, and with it, the whole of my stomach and spleen: time now to look back, on the year since – and before.

It all began some eighteen months earlier, in the summer of 2014, when I began to experience what I incorrectly described as “stomach” pains – and the GP described more accurately as abdominal pain. He diagnosed a bowel complaint, diverticulosis, and prescribed antibiotics. This brought some relief, but some residual pain remained – so another course of antibiotics. After the third such attempt, he said we needed to take a closer look inside the bowels, and referred me (under the “two week rule” to a bowel specialist at Royal Surrey for a colonoscopy. I had not previously heard of a two week rule. When I looked it up later, I found that this applies whenever there is any risk of cancer. Alarm bells were ringing. The consultant agreed with the GP diagnosis, but also that we needed a test to check, just to “confirm the diagnosis”. However, instead of the colonoscopy, he recommended a CT scan, because that would show what was going on outside the bowel, as well as inside it. That decision was of major importance.

Under the two week rule, everything had moved quickly to the date of the test – and much more quickly thereafter. Continue reading “One year on from GIST surgery: (1) Diagnosis and early treatment”