Shouldn't I be Somewhere???

I haven't been to hospital for two weeks and it feels very odd indeed.

For most of the past eight months I have had at least one appointment most weeks and sometimes several in a two week period.  At times I felt I was living there!

I'm quite grateful to be there less frequently but I can understand why some people feel bereft at the end of active treatment.  You have a whole team of people lavishing care and attention on you; working to give you a good outcome. Then, as suddenly as it all started, they are gone and for a while you are on your own.  I'm quite enjoying it, but it still strange not to be dashing off there.

I wrote previously that cancer treatment can feel rather like a full time job and certainly it takes up rather a lot of time.  I am fortunate in that I have a job which is mainly (though by no means exclusively) office based and that my employer and colleagues have been supportive.  I have been able to work throughout, save for two weeks after surgery and the time to attend hospital appointments.  I have answered emails and done paperwork from odd corners around the hospital, worked from home and used one of our offices that is more local to my home than my own office.

As a result I feel that I simply transition between working on treatment and working at the everyday job.  Now that is helping me move out of treatment and into everyday life while finding yet another New Normal.

Having said all that, it still feels somewhat peculiar not to be leaving the office mid to late afternoon to get to radiotherapy!

A New Fixture?

Monday 15th to Tuesday 16th January saw the 1st UK Interdisciplinary Breast Cancer Symposium take place in Manchester, hosted by Breast Cancer Now.  It was a packed few days, consisting of a mixture of plenaries, keynotes and parallel sessions plus exhibition and posters.  The major problem was deciding which sessions to attend and finding time to see the posters!

It isn't easy to pick out highlights, but here are some of mine ...

Dr. Laura Esserman, in the first keynote, made a good case for the neo-adjuvant approach, seeing it as precision medicine at its best. Not only can this approach obtain valuable information for the individual patient in terms of what is or is not working, but it can shorten the time needed for trials to yield results. She raised the question of whether knowing the response might enable a de-escalation of therapy for a high response and/or low risk and escalate for low response/high risk.  And with the possibility of a shorter time to drug approval, could we make the case for lower pricing?

In the Metastatic Disease session, Professor Stephen Johnstone outlined situations in which there is a compelling reason for combination therapies, reviewing a number of recent trials.

Perhaps not surprisingly, given recent events (!), I found the Triple Negative Breast Cancer session particularly interesting.  Professor Andrew Tutt delivered a packed talk on the biology of new targets and Dr Chuck Perou followed on with precision medicine using a systems biology approach, teasing out the different types of TNBC. Jelmar Quist then drilled down to the specifics of HORMAD 1 expression.

Monday's final keynote on understanding risk was delivered by David Spiegelhalter. As always, he spoke powerfully and entertainingly.  Media coverage, exaggerated claims and negative framing - not to mention the drive for certainty - all cause problems as we attempt to understand and communicate risk.  So what should we do? We need to justify what we claim, use absolutes rather than relatives and put things in perspective.  Engage, take responsibility and present properly!

After which it was off to mingle, aided by wine and posters!

Tuesday opened with an excellent keynote from Professor Jack Cuzick on breast cancer prevention in the population at large, both the simple and the more complex options.  Avoiding tobacco, controlling weight and being physically active were, of course, all at the top of the list. While low dose aspirin has  smaller preventative effect for Brest cancer the some other cancers, it might still be important (hence the current trial). And while alcohol is less of an issue than many people think, it is still an issue.  For the high risk population there are chemo-prevention options.

That lead neatly to the session on Managing and Measuring Breast Cancer Risk. Professor Fiona Gilbert spoke about the need to consider different screening methods and re-think screening strategy. Professor Gareth Evans then picked up on stratified screening, taking us through the PROCAS 1 study. The issue continues to be finding and treating the ER -ve, Grade 3 and Triple Negative cancers...  Professor Anthony Swerdlow presented some findings from the Generations Study and Zoe Kemp concluded the session by discussing genetic risk and testing. Interestingly she said that when testing criteria were broaden in a study, 50% of those found to have  mutation did not meet the testing threshold of either Manchester or BOADICEA. Definitely food for thought there.

In the afternoon I attended the session by David Spiegelhalter and Lesley Fallowfield on communicating risk. They pointed out that there is often a lay assumption that more treatment is better and that the harms and risks are less likely to be considered. This is not helped by low levels of numeracy and high levels of statistical illiteracy - and not just in the lay population!

I concluded with the Challenges of Local Management, which included the situation of an occult primary and positive lymph nodes. The final paper was delivered by Dr Charlotte Coles on current and future indications for partial breast radiation. With all the trials to consider, this looks to be an important step. As someone who has just experienced the advances in radiotherapy over the last nine years, I look forward to this as an option for some women in the not too distant future.  Which brings us back to the realisation that more treatment is not always the better option.

Overall an encouraging Symposium which pointed to the fact that we have much still to do.


At a personal level, while it was tiring for me, I was delighted not only to have the energy and opportunity to attend this Symposium but to do so with both the patient advocates and the cancer professionals who have supported me over the past months.

Fugit inreparabile tempus

... as Virgil said in his Georgics, which I re-read when I stayed with my sister in November.

I haven't posted anything to the blog for some time. With treatment and everyday life and work, time just disappeared.

I finished chemotherapy and had my surgery in mid November.  Happily my sense of taste returned in time for Christmas! I am now having radiotherapy and have just a week now before that too is done.  Time both stands still and rushes past while in active treatment; it is an odd sensation. Both chemo and surgery went well and I'm making a good recovery from both.

Radiotherapy has come a long way in the last nine years. Although the basic principles are still the same, the equipment and delivery (and imaging) are more advanced. Planning was a much faster process.

Somehow it feels more comfortable this time around. In part this is, no doubt, because I know what to  expect but it is also true that in spite of much more extensive surgery to the axilla  (not to mention lymphoedema), it is a more physically comfortable set up than it was before.

This time around I am being treated in rooms with a mazed entry rather than a heavy shielded door and that is more pleasant. The space feels more open and airy and there isn't the clunk and slightly forbidding feeling of the door rolling into place and locking you in.

It is is, as always of course, helped by having a kind, thoughtful and informative treatment team; prepared to indulge my requests to take photos and answer my incessant questions.  In this I have been fortunate throughout my treatment.

Goodbye to Pink

As we leave October behind I am very thankful to see the back of the awful pinkness of people treating breast cancer as a big joke and an excuse for a giggle. Above is the real colour of October!

It amazes me that anyone could think that a campaign called 'tickled pink' could be anything other than misconceived and insulting at best. After all, what does the phrase mean? Would you say that you were ticked pink to be involved in a road traffic accident, or to have been made redundant? And if not, why on earth would you use the phrase in relation to cancer? 

Wear it pink might be fine if people were being encouraged to wear a pink ribbon or blouse, shirt, tie, wristband etc. for the day. Encouraging pink feather boas, wigs and huge cardboard spectacles while grinning inanely is rather a different matter.  Moreover, while breast cancer affects a large number of people and still kills far too many, there are so many other cancers also in need of research and awareness. 

I suspect that the reason for both the focus and the silliness is because we are back to the school boy behind the bike shed mentality of making anything to do with breasts a bit of a giggle.

And while I'm having a rant about insulting behaviour - I see from the news that Macmillan have appointed to a post designed to counteract some of the cancer myths and misinformation that circulate so freely. This, in theory at least, is an excellent idea. Indeed, many of the specialist cancer charities do issue press releases designed to refute some of the more widely circulating myths. However, if the report I read is accurate, the project seems to have got off to rather a bad start with the post holder making some sweeping and highly patronising remarks about the people she is supposed to be supporting.  

She is reported to have said “Once the doctor says 'cancer', people automatically then shut down and they don’t take in the information they are given ... and then they'll sit online that night and get themselves into a frenzy with what they're reading”. 

While this may well be true of some people, it certainly was not so for me on either diagnosis. Neither was it true for many (indeed most) of the cancer patients I know. Such a general statement about 'people' diagnosed with cancer is at best misguided and patronising and indeed is itself misinformation! It certainly does not engender confidence in the post holder. Moreover, the remarks were totally unnecessary in order to justify her project. All that was needed was a comment that in the digital age misinformation can spread rapidly and extensively until it can appear common knowledge until you look more closely.

Her words do fit the pattern of this charity's disempowering attitude to cancer patients. As someone who has worked in advocacy and empowerment for over 20 years I find this attitude both offensive and unacceptable. If a member of my team was making remarks like this about our clients, we would be having some very serious conversations. In practice, I am pleased to say that I have every confidence that no member of my team would make such remarks. 

Poetry on Prescription

Today is National Poetry Day in the U.K., and fortuitously it was also my regular 3 weekly chemo clinic appointment. The information display screen in the clinic included details of the hospital’s NPD activities so after my appointment I decided to take a look.

Postcards with poems printed on them were being given out at the main hospital entrance and inpatients were being given one of the cards with their lunch trays. There was a display of the poems, selected by what I assume was the event’s organising group, up on the wall outside the main entrance and arcs of excerpts from poems written on the pavement. Although I missed it, there was a poetry reading session over part of the lunch period.

Perhaps the biggest draw for those who had the time was the Emergency Poet, who would prescribe you a few poems. Totally irresistible as far as I was concerned! She was based in an old ambulance, which was interesting in its own right and still retained some of its historic fittings but also had poetry-related additions. Her ‘patients’ (a mix of the hospital’s staff, students, patients and visitors) sat on one of the stretchers with their feet up, while she sat on the opposite one. She then asked questions about your lifestyle, likes and dislikes, how you relaxed, your favourite books, and indeed, whether you usually read poetry. Nothing particularly intrusive and quite cleverly crafted questions so that you could say as much or as little as you chose. 

Based on your answers she selected some poems for you from her file of poems and wrote you a ‘prescription’ of how and where to read them. There was something rather special about coming away with a selection of poems chosen specifically for you.

As I walked to the bus stop with my prescribed anti-emetics for Monday and my prescribed poems sitting side by side in my bag, I was reminded that for many people, of whom I am one, there is an important role for the arts (poetry, visual art, music, dance …) as you go through treatment.

October looms

We’re not half way into September yet and already social media is filling with images of people with silly pink outfits and accessories grinning inanely and reducing to a joke a disease that still kills far too many women and men. 

The argument is that this somehow raises awareness. However, in reality the people who see these images are already well aware. Those in the hard to reach groups, where awareness is still needed, are rather unlikely to see them or to relate them to cancer awareness.

I’m sure that it does support opportunistic fundraising. But at what cost? If we trivialize what is a serious disease we do ourselves and the public at large no favours in the long run. The message becomes lost in the process. Some would argue that the end (fundraising) justifies the means, but that is not a position with which I am comfortable. I have no argument with the calmer statements; the fountain that runs pink during October with signage explaining why, a coffee morning/evening/fundraising event with information. It is the semi-hysterical pinked shrieking that I find so offensive.

You can still have fun while fundraising without turning things into an offensive circus. While I am no fan of Macmillan as an organisation, their World’s Biggest Coffee Morning events are usually enjoyable without trivialising cancer. The HIV community have, from the outset of their awareness and fundraising campaigns, managed to hold events that are both highly successful and thoroughly enjoyable.

Is it because we find breasts a bit embarrassing but not as unmentionable as bowels? A bit of a schoolboy giggle? The Page 3 mentality?

It is 25 years this year since Estée Lauder started their Campaign and co-founded the pink ribbon to raise awareness and funding for research. Time for the rest of us to grow up and leave the embarrassed schoolboy attitude behind the bike sheds.

Treatment as Orienteering

Navigating the way through treatment follows a similar course to taking part in an orienteering event. You may have registered in advance by way of diagnostic imaging and pathology, but then the day comes when you receive the official diagnosis and, with your hospital number as good as pinned to your front, you’re headed towards the start line and into the forest.

The first consultation is where you receive your map in the form of the proposed treatment plan, showing the various checkpoints. In my case: joining trial and study, port operation, Neo-adjuvant chemo part 1, mid way imaging and tissue samples, chemo part 2, surgery, radiotherapy, and the ‘finishing point’ of a post treatment appointment. These have to be visited in the correct order and the straight line between each is unlikely to be the actual route taken. You work out the likely routes but know it has to remain a bit flexible. You’ve got your compass and if all else fails and you have an emergency you have your whistle in the form of the 24 hour emergency phone line number.

The various members of the team provide the control descriptions by way of discussions on what to expect. These checkpoints are manned (usually womaned) by oncologists, surgeon, breast care nurse, chemo nurses, clinic staff, etc. All sorts of obstacles are apparent from the map, so deviations from a straight line route will have to be made. 

While you do keep your eye on the whole map and the ‘finish’ (not that there is a real finish here, just an appointment at the end of this acute treatment phase), what really matters is the constant checking of the route you’re currently on to the next checkpoint. Which path will be the easiest? What are the possible obstacles and how will you get around them? There will be small waypoints on the routes between checkpoints (medications to take, blood tests, clinic appointments and questionnaires). What are the actual obstacles and how do you tackle them? What techniques will you use?

You see other runners, some on the same course, others on different ones. Some are on the professionals’ course, as they run trials and studies and they develop new services and ways of doing things. You may meet them at shared checkpoints. As this is a friendly event rather than a major international competition, most runners will make time to exchange words and smiles but all are intent on getting round the course. 

You follow and cross paths, fences, streams as you move along the course. Sometimes you become over-ambitious; that gate vault really wasn't wise!

Gradually, you mark off your arrival at each checkpoint with your electronic dibber. Eventually you will arrive at the finish point of the post treatment appointment, after which you make your weary way home. Hopefully there will have been friends, family, fellow runners and professionals there to cheer your arrival in the finish pen.

Of course, it can also be looked upon in terms of a board game - miss 2 turns as you wait for blood to be taken. Right at the moment I prefer the active imagery (while avoiding the fighting/battle stuff) but I have devised and used a board game in the past when trying to get across the patient ‘experience’ to a variety of professionals. It allows hard hitting points to blend with humour.

So here I am, moving through forest and across open ground, splashing through streams and     sliding under fences, performing the occasional unwise gate vault . Stopping occasionally to check the map, take a breath or admire the view. Dealing with obstacles and route changes but moving steadily round the course.