Thursday, 17 August 2017

Targeted!

Back in December 2014, I had a bit of a rant against Macmillan’s attitude to people attending appointments on their own. I found it unacceptably patronising then and I still do. Unfortunately, they have built on this with advertising and fundraising campaigns and in their presence in hospitals. I can't help but feel that they now have a vested interest in portraying people with cancer as weak and unable to manage without the help of their charity.

The practical outworking of this is that I have now been targeted three times by pushy but needy volunteers who have noticed that I am in the clinic on my own. On one of these occasions I was actually quite deeply engrossed in reading and was still interrupted. They say they would like to speak to me, are quite persistent and seem incapable of taking even quite heavy hints that I don't want to speak to them. And they go on about ‘not facing cancer alone’. I assume they then toddle back to their admin area and record another person they have ‘helped’ in order to justify their funding.

Now, if these were paid employees I would have taken a very strong line at the outset. The difficulty is that not only are they volunteers, but they clearly have their own issues and at least one that I know of is volunteering following their own cancer treatment. They mean well and I suspect some of them are quite vulnerable. It would be easier if they could just take a hint but as they don't seem prepared to do that, I have decided that I now need to be blunt.


I have done my Good Deeds by letting these needy people speak to me but enough is enough. Next time I will be polite but will state outright that I don't wish to speak with them and I will let them know (also politely) why.

Saturday, 15 July 2017

Hair today, gone tomorrow ...





While by no means all chemotherapy drugs cause hair loss, chemo for primary breast cancer usually includes those that do. It is something that many people find difficult and it is perhaps the most obvious outward sign that you are having treatment.

I’m not entirely sure how I feel about it. Having my long-for-30-years hair cut short was quite a shock to the system, but the very positive reaction I received to the new, if highly temporary, look was a pleasant surprise. Especially as it seemed absolutely genuine rather than because people were trying to be encouraging. Indeed, many people who commented didn't know the reason why I had had it cut. So for a week or so I enjoyed my new look, until the look started changing on a daily basis as more and more hair falls out.

Apart from the nuisance value, I began to consider how other people might perceive me if it was obvious that I was having chemotherapy. At that point I began to get concerned that the promised wig appointment had not materialized, in spite of following up. Chatter in the chemo unit showed similar concerns were common. For almost all of us, it wasn't the regular contact with family, close friends and colleagues that was the issue. Almost everyone was okay with scarves, hats or nothing for that. What was a common cause for concern was attending big social events or business meetings at which ones status as a chemo patient became obvious. I realised that, at least for me, it was about not wanting to be defined by what is happening to me. Not wanting to have people make assumptions about what I can and can't do professionally based on appearance.

So not a moment too soon, I finally had my wig fitting appointment. Some looked awful and some looked very odd indeed but eventually, with a helpful second opinion from a friend who took quick photos of me in the eventual shortlist of two, I found something I think I can live with. 


How much I wear it will remain to be seen and, following conversations with a couple of friends, I am considering getting another one in a different style as an alternative. However, simply having it to hand has made me feel more comfortable with the fact of hair loss.

Monday, 10 July 2017

... but I've already got a job!


As many people with serious illnesses or long term conditions know, they can all too easily turn into a full time occupation. This is particularly so in the immediate aftermath of a cancer (or indeed any other) diagnosis and then at key points during treatment. You feel that you might as well be living at the hospital and in spite of how grateful you feel that things are moving fast to give you a good outcome, it is all too easy to resent the intrusion into what had been your everyday life. 

In my case, this is now somewhat mitigated by my hospital’s excellent computer system that allows anyone working with me to see my appointments at a glance, and indeed track me through the hospital. The recent upshot of this was that after having made an appointment to see me, my breast care nurse then saw that I was due to be at the hospital for a half day procedure with several lengthy waits between appointments. So she called me and arranged that we would meet while I was in the waiting periods. The combination of good staff and supportive tech can make a tremendous difference to patient care and it is good to feel that my time is viewed as valuable.


I’m hoping to sign up to MyChart, which works with the system to enable you to see test results, appointments, etc. 

Of course, it doesn't always fit together so well (the set up admin for MyChart is a bit of an issue), so it still feels like a second full time job at the moment…

Wednesday, 28 June 2017

Here We Go Again


Here We Go Again


One aspect of life in the land of New Normal is that every now and then, however good your prognosis, the mind turns to the possibility of a recurrence. It is also a fact that having been diagnosed with one cancer increases the probability of being diagnosed with another. 

In the case of breast cancer that includes a contralateral breast cancer with the possibility of completely different pathology - an entirely new cancer. That is just what has happened to me.  The whole process has been very rapid and I now find myself having started chemotherapy; in one clinical trial with sub studies for a drug not routinely given in the early breast cancer setting, and in another very new genomics study.

I’m not being treated at my local hospital this time. This is a less straightforward cancer so I thought I might do better to travel just a bit further to a hospital known for participating in, and indeed the initiation of, cancer research including breast cancer research. It is also a hospital I know well through my patient advocacy work and they are early adopters when new findings are published. It is a very personal decision for which I have weighed up feeling comfortable at this particular breast unit with the additional travel.

Again this time around I have turned to journaling as one of my coping strategies. Blogging is a form of journaling and I hope to maintain this blog throughout my treatment and beyond, also working in my continuing work to bring the patient voice into cancer research. However, I do have to be honest and say that much of my innermost thoughts will not make it into the public domain in the interests of myself and others. While I fully embrace the digital age and thoroughly enjoy using this medium, I still value my privacy enough to take on board the basic rules I learnt when starting to use email and social media 

  1. Never put in an email/message something you wouldn't be happy to send on a postcard.
  2. Never put on social media something you wouldn't be happy to put on the village notice board.
  3. Never fool yourself into thinking you can keep anything you do put out there private.
  4. There is a lot more to confidentiality than just not using someone’s name.

Wednesday, 16 November 2016

Reflective Monday

Monday at the NCRI Conference got off to a good start when I attended the plenary lecture by Cheng-Har Yip from Malaysia on the subject 'Challenges in the management of breast cancer in low and middle income countries'.  So much of the conference is about high tech solutions which are not always available in low and middle income countries so it was good to have this reminder.  We heard about challenges at all stages from late presentation because of fatalism and a preference for trying alternative therapies first, though lack of access to reliable pathology and onto low access to radiotherapy.  Some countries have a multitude of languages so patients may face a language barrier on top of problems such as distance and the cost of treatment.  The importance of a multidisciplinary approach was stressed along with collaboration between the high income countries and the LMICs.  It was very encouraging to hear the stress the speaker put on listening to what women say that they want.

This last point also came up in another excellent Monday plenary, namely Stan Kaye giving his Lifetime Achievement Award lecture on drug development and ovarian cancer.  He spoke about BRCA testing now becoming routine, the use of the PARP inhibitors and the management of recurrent disease. He also spoke about new targets, heterogeneity and the importance of listening to the patient.  One of his last points was 'never forget who you are treating.'

The Molecular Diagnostics workshop was a great opportunity to reflect on lessons learnt from several initiatives.  Louise Jones of Barts Cancer Institute reflected that the transformation of the NHS is a significant legacy of the 100,000 Genome project.

Monday evening saw the traditional Independent Cancer Patients' Voice lively meal in the local Pizza Express to which we invite a number of our friends an colleagues in the research and clinical practice community.

#NCRI2016

Thursday, 10 November 2016

Back in Liverpool

It has been a very long time since I last posted here; it has been a busy year on many other fronts and blogging rather slipped.  But November is NCRI Conference month and I was there again this year for 3 days of cancer conference, exhibition, posters and networking.  As usual, I will split this into bite-sized pieces as this makes it easier to write up!

For the last few years the conference has had a smart phone/tablet app.  It has been a bit of a novelty in the past but this year I found it extremely useful.  There is still room for improvement, but this year's new feature of being able to write notes of sessions straight into the session details was invaluable. It also supported online voting in the sessions where this was relevant and the ability to send questions to the session chair while the presentations were ongoing.  You could message other delegates - provided they were using the app, of course - and see floor plans and maps of the session room locations.

My journey up to Liverpool was not smooth.  I had to travel via London and my first train was delayed, the one before had been cancelled, it was half the stated length and Arsenal were playing at home.  On top of which, work on the track meant the train had to take the long route round and in spite of having 45 mins between trains I began to think I was going to miss my connection. Happily, I didn't and after that the journey improved no end.

The first and last days are half days, with two full ones between.

Sunday's highlight was the debate "New Tricks for Old Drugs", hosted by the charity Breast Cancer Now and chaired by Judith Bliss.  The motion was "This house believes research into repurposing existing medications and optimising use of current breast cancer treatments should be prioritised above research into developing novel agents".  Speaking for the motion were Robert Coleman and David Dodwell, while Paul Workman and Susan Galbraith spoke against.  A poll (with online voting!) at the start showed a large number of people declaring themselves as undecided, so the speakers had all to play for!

Rob Coleman started out with the bold statement that drug discovery was broke and not delivering for patients. He pointed out that while there had been a decline in mortality since 1990, this had now plateaued.  There have been no new adjuvant therapy drug approvals in the early setting for 10 years and new drugs for metastatic disease are not getting NICE approval. He could see no likely change in this position so money was being spent with little patient benefit and this was becoming unsustainably expensive.  He made the point that breast cancer is in practice a large family of rare diseases. Therefore drug repurposing deserves investigation and he cited the position in regard to bisphosphonates in this respect.

Paul Workman then spoke to make the point that while drug discovery is difficult, timescales are shortening and even with repurposing, discovery is still essential. He gave examples of rapid repurposing coming hot on the heels of discovery. There is still a mass of targets for investigation and drug discovery is vital in the field of overcoming drug resistance.

David Dodwell said that we need to do better with what we already have. He spoke about extended endocrine therapy, compliance issues and variations in practice.

Susan Galbraith started out by reminding us that while improvements start in the metastatic setting, the greatest effect is seen later when drugs move to early stage. This means that RCTs can underestimate benefit. She pointed out that UK spending on healthcare, and within that on cancer drugs, is lower than in much of the rest of Europe and that we could choose to spend more.

The questions from the floor pointed out that we need both repurposing and discovery. It also drew out that there are issues other than efficacy to consider, such as tolerability and that there are fewer unknowns with existing drugs.

I was a bit surprised that the proposers of the motion didn't make the point that they weren't suggesting repurposing instead of discovery but that, at least for a while, repurposing should take priority.  All in all it was serious but fun and conducted with great good humour.

In the final vote the motion was narrowly defeated but could claim the victory of having converted a greater proportion of the undecideds to their view. After which it was time to go down to the exhibition area for a glass of wine and chat with some of the exhibitors.

  

Saturday, 16 January 2016

European Commission Initiative on Breast Cancer

Back in early December I attended the plenary of the European Commission Initiative on Breast Cancer held in the beautiful setting of Baveno on the shores of Lake Maggiore.  Throughout the meeting there was plenty of opportunity at the breaks for networking.

Following the welcome, a series of speakers set out the project's current position in relation to developing a Europe-wide quality assurance scheme, guidelines for screening and diagnosis and a platform for further guidelines to cover care from screening to end of life.  The initiative has wider implications as it will be able to be used as a template for similar projects in relation to other cancers and diseases.

Pathology issues played a strong part on the first day, stressing that pathology is about so much more than testing (important though that is).

After watching a beautiful sunrise over the lake from the balcony of my room and fortified by an excellent Italian breakfast, I approached Day 2 in eager anticipation.  For me the highlight of the morning was the series of country profiles in which speakers from Hungary, Malta and Norway gave a fascinating insight into three very different sets of issues, challenges and solutions.  Long travel distances are a problem in some parts of Hungary.  That is not a problem in Malta, with its small landmass, but low numbers make clinical trials difficult there.  Norway appears to have high rates of interval cancers because all are captured, and informed consent in data collection has been a problem there.

The afternoon consisted of a choice of parallel workshops followed by a guided poster tour.  I could quite happily have attended any one of the 4 workshops, but eventually chose Communication in Person-centred Services.  This workshop involved presentations from 3 speakers and a good deal of participant participation.  It came up with some catchy images, parallels and metaphors, to which I will return later.

The conference dinner was excellent and provided a good opportunity for more informal networking.

The last day started with a keynote looking at evidence from qualitative research in guideline development.  This included asking 3 questions of proposals:
          Is it effective and safe?
          Is it acceptable to patients and others?
          Is it feasible to implement?

After the keynote each workshop fed back on they sessions, which was an excellent opportunity to catch up on the other options I'd rather have liked to attend.  I was particularly interested in the 'Volumes' workshop.  There is some evidence for a volume effect, but not as much as in complex surgery.  And should it be the surgeon or the hospital/unit volume?  In their feedback, the group posed the question - what do patients feel about volume?  My answer to that was - for anything complex, I really don't want to be operated on by the chap who was once known to do the procedure with the textbook propped open before him.  I want it done by the woman who can do it in her sleep, regardless of how far I have to travel for that - provided that she isn't actually asleep at the time, of course!  For something more straightforward, generic experience is probably fine.

The closing presentations included one on equity of access to screening; one of methodological standards for guidelines; and my own presentation on involving patients and the public in the difficult decisions using the over diagnosis/over treatment issue for illustration.

An interesting question was posed in relation to personalised screening, taking personalised medicine to the pre-diagnosis stage.

The issue of palliative care and the need for this to be included was raised several times; years to live, not years to suffer.  Another point that came up several times was the need for whatever is agreed to be attainable by all and not just the richer European countries.

I said before that the Workshop came up with some good images and metaphors.  Several of these resonated with me, including the following:

Luzia Travado presented on psychosocial support and used the analogy that diagnosis takes you to a new country for which you don't have the map and don't know the language.  I can relate to that and was fortunate enough to find both map and phrase book, but not everyone does manage to find those vital tools.

Kathi in her presentation suggested that patients practice telling their narrative in 75 words to support quick, easy and efficient communication of the vital issues.  She also spoke about the internet as being the blockbuster drug in patient engagement in their healthcare.  This, of course, does raise the question of how engagement can be achieved for those without (for whatever reason) good internet access.  Kathi also referred to the e-patient - Empowered, Engaged, Equipped and Enabled.

It was an excellent meeting; realistic but optimistic.  The patient voice was welcomed throughout the plenary; Susan Knox of Europa Donna spoke in the welcoming session on patient expectations, the Communication workshop included the presentation from Kathi Apostolidis of the European Cancer Patient Coalition, and I presented in the last presentations.

It isn't an easy project, especially given the economic climate, but it is one that could deliver a good standard of care wherever you live in Europe.