"The importance of marking the end of Cancer treatment."

I, not that long ago finished cancer treatment.  Over all it was nearly a year of hospital appointments, tests, consultations, chemotherapy, surgery and radiotherapy.

I was aware that other hospitals have a bell that patients can ring when they finish their treatment and  I'd seen video clips on the internet of people proudly ringing the bell and smiling

I personally hadn't given it much thought but two day's before my treatment ended, as I was struggling to sleep, my thoughts turned to how I felt as the end of this treatment drew close, I realised that it did matter to me and I felt I needed to mark the last day of my treatment in a meaningful way.

The Western General Hospital in Edinburgh doesn't have a bell to ring like other hospitals so I started to think of a way I could mark this day. I came up with an idea to draw a chalk design (inspired by a kolam I wanted to attach pictures but that doesn't see possible :0( ) at the threshold to the cancer unit.

I know that might sound like a strange thing to do, but I felt that to just walk out of the hospital like every other day, after being through so much would be such an anticlimax and I really wanted to find some small way to mark this day as different, because even though the day would be very similar to the previous month of radiotherapy appointments it would have a much greater meaning to me

It's hard to explain how complicated my feelings were about treatment ending; from the diagnosis through all the meetings & choices and treatment you are kept so busy and feel like you are actively doing everything you can to hopefully heal form this scary diagnosis. To suddenly be back to your own life without that level of activity and support is daunting.

The next day when I arrived for my radiotherapy treatment I gathered my courage and spoke to the staff at reception, who found someone I could talk to about my request, they found someone else who listened and looked a little bemused at the picture I had on my phone to give them an idea of what I hoped to do, but she dutifully found someone else, who eventually said. "I have no problem with that, I look forward to seeing what you create."

I went home feeling lighthearted and pleased that I had acted on this need to express how I felt.

Not long after getting home I received a call from someone at the hospital who had decided they couldn't let me draw with chalk at the entrance of the cancer unit as it "might offend someone" I spoke to this hospital representative at length; she explained that they had to respect the needs and feeling of everyone entering the cancer unit and they were concerned that someone may be offended by my chalk drawing.

I know that people attending the unit are going through an extremely harrowing time. I know not everyone is as lucky as me to be able to "finish" treatment. I have sat in these waiting rooms watching people so obviously ravaged by the treatments that we hope will cure us.

I appreciate that people facing this journey are vulnerable and emotional, sometimes angry. but to focus only on what "might offend" and to deny what might, raise a question, or a smile, or to find joy in someone else's positive outcome when your own might not be so bright serves to diminish the human heart and in my mind is to focus only on the negative.

I had been very clear I would be respectful, I would make sure I was not in the way. I guessed I would take about 10 minuets at the very most to draw something that for me symbolised the end of this part of a cancer journey and my wish to move forward positively .

I could have decided to just do it with out asking but I felt it might be important to raise this point with the hospital and also to talk to anyone who in passing might ask me what I was doing.... to start the discussion "what will I do at the end of my treatment?"

I was really upset on the phone it felt like a "nanny state" way of reacting to something that, whilst out of the ordinary and not the way most people would choose to mark the end of their treatment was important to me. Would it really be so bad, to let someone creatively express themselves by drawing chalk flowers on the pavement outside the cancer unit at two o'clock on a Friday?

To my shame I didn't remain as calm and eloquent as I would have liked. I got sore and nasty on the phone, not my best moment.( But this was difficult and painful)  The following day I was met in the radiotherapy department by well meaning nurses who wanted to help me find someway to mark the end of treatment. By this point I was sore with the hospital, and their well meaning suggestion missed the mark, as some of you may know with this kind of thing the meaning must come from the person involved.I had imagined a meaningful way to mark this day and a diluted imitation didn't connect with me but I appreciate the thought.

If there had been a bell to ring.... maybe I would have just done that and felt  appeased but in its absence I had found something more personal and meaningful to me.

In the end I decided draw with chalk at the entrance to my flat, which was met with interest and good wishes by my neighbours, my taxi driver and even photographed by the postie.

Then at the Hospital I was met by close family and I found a way to mark the threshold that wouldn't offend, I poured a little water and scattered some flower petals. Then we found a quite corner to mark the day with chalk flowers and a moment of gratefulness and a positive step forward.

I had great care from the hospital, I feel incredibly blessed to have received the care and treatment I received, we are so lucky to have the NHS especially at the moment when it is so under pressure and under resourced. so In one way it feels churlish to complain about something so small. But how we end treatment (and begin in my mind) does matter and how we facilitate people marking the end of treatment by either having something like a bell to ring or a place to take a moment to mark these important aspects or being open to a small random request in the absence of something more organised I think needs some consideration.  

When I was speaking to the hospital representative I was told that there was an understanding that there was a need to support people to mark the end of treatment as it is well known how difficult a time it can be. I was told the hospital had been meeting to discuss this need for a number of years.If you already can see the issue perhaps not shutting down someone who has a individual solution would be a start.  I was told "oh you'll get a letter" I did, some weeks later to invite me to the moving forward breast cancer uk mornings, these, however helpful, did not help me mark the end of my treatment which for me was about doing something small but meaningful on the day.