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.