... 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.
Wednesday, 1 November 2017
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.
Thursday, 28 September 2017
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.
Monday, 11 September 2017
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.
Thursday, 31 August 2017
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.
Thursday, 17 August 2017
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
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.