Here, particularly for Jan, is the story of the armed robbery at the Post Office.
This happened years ago, when I was in my early 20s, working in central London and living in north London. One particular day I had finished work early and on my way home from the tube station I called into the Post Office. A number of counters were open and I was nearly at the head of the queue with just a heavily pregnant woman in front of me when in burst a couple of young men in balaclavas waving some sort of guns around and shouting "nobody move". One advanced to the parcels hatch and demanded it be opened. When a staff member had opened it he vaulted through with admirable agility, produced a sack and told the staff to fill it with the cash.
At this point his accomplice left and was rapidly followed by most of the queue, particularly those who weren't near the counters. I'd rather liked to have made off myself, especially as I wouldn't have been among the first and so could have changed my mind if they were being shot on exit! However, the pregnant woman in front of me was in distress and clearly wasn't going anywhere, and you just can't run off and abandon a woman in those circumstances, can you?
It didn't take long for the staff to fill the sack and Robber Boy let himself out through the door rather than using the hatch and ran out and off down the road, where he was picked up by Accomplice on a motor bike. I didn't see what followed, but it would appear that he must have loosened his grip on the top of the sack because as they shot up the road the top of the sack fell open and notes flew out and were collected up by passers by!
As he left the building the staff sounded the alarm and the limited number of us remaining were again asked not to leave. Again I would dearly liked to have gone as it was all too clear that a long wait was likely, but again I felt I couldn't leave my new-found friend. The staff came out from behind the counters and started wandering round and when no-one seemed to have taken note of my new friend's condition I decided that if I had to wait then at least things would be done my way. I approached the member of staff who seemed to be in charge and said firmly (in my best imitation of my mother!), "This lady needs a chair and a glass of water. Would you see to it immediately please?" The chair and water were produced and I asked her if she had far to go home and whether anyone could come for her. She said that her husband would come if she could phone him.
At that point the police arrived and said that they would want to speak to each of us in turn and please to be patient. They showed signs of deciding to speak to the staff first, so again my mother-imitation seemed like a good idea and I suggested to one of them that my new friend needed to phone her husband and get home as quickly as possible. This was in the days before we all carried mobiles so we were taken into the office and she phoned him. In fact, the police spoke to the customers first, possibly because they feared my friend might be about to go into labour... Not long after this her husband arrived and after they'd both thanked me he took her home. I was able to leave in another 5 minutes.
There is rather a nice sequel to this. A couple of years later I had moved a bit further north but still within the same general area and was working locally. One day I was walking between home and work when coming towards me was a man I vaguely recognised and who was carrying a child on his shoulders. As we passed he said to me "Were you in the East Finchley Post Office when it was held up?" I said that I was and realised how I knew him. "You helped my wife," he said. And added, gesturing to the child, "this is the baby"!
Saturday, 25 June 2011
Saturday, 18 June 2011
Patients Participate!
This was a workshop held today with a view to bringing together people from a wide range of communities (patients, researchers, interested charities) to look at the motivations, challenges and barriers to people accessing biomedical information. It was a day of thought provoking work as we thought through how these challenges can be met. Although I was there as a result of my personal involvement with Independent Cancer Patients' Voice, I also had plenty to think about - and say! - in my work capacity.
The day was introduced by Liz Lyon of the University of Bath. She set the tone in her opening remarks, commenting on the fact that citizens are getting involved in a wide range of projects across a variety of branches of science. She went on to say that sometimes when research is published lay understanding can be lost in the technical language.
Lee-Ann Coleman of the British Library (who hosted the day at their Conference Centre) discussed Open Access and posed the question "does access make it accessible?". Sara Ellis of the Association of Medical Research Charities reminded us that involving patients at all stages is not always easy and may require organisational cultural change. She also made the extremely important point that involvement must be meaningful and not just tokenistic. This last point chimed with the experience I have had over the last c15 years working in the disability sector.
Melanie Welham from the University of Bath concluded the first part of the Workshop with a consideration of the barriers faced by both patient and academic communities and made the point that better communication leads to wider participation.
After that we moved to smaller working groups to think through the needs of the various groups who access biomedical information, including a discussion on why and how they accessed it. This took some time and was discussed in considerable detail. At the end of the time each workshop came up with a set of key recommendations. These included things like the need to produce clear lay summaries that include things such as any uncertainty in the information and the context within which the research had been done, lay involvement, information formats and open access to information in various layers of detail. Thought was given as to how this could be achieved with further recommendations such as a set of guidelines for producing the lay summaries.
After the recommendations from each group had been fed back there were final presentations from Graham Steel, who is a patient advocate, and from Simon Denegri, chair of Involve. Graham Steel emphasised the use of modern technologies, while Simon Denegri mentioned the new contract the research comminity has with society and the fact that lay summaries can bring the science alive.
The project is ongoing and will continue its work aiming to bridge the gap in access to and understanding of biomedical and health information and research. It is clearly a worthwhile project which should open up the availability of scientific research to a wider community.
The day was introduced by Liz Lyon of the University of Bath. She set the tone in her opening remarks, commenting on the fact that citizens are getting involved in a wide range of projects across a variety of branches of science. She went on to say that sometimes when research is published lay understanding can be lost in the technical language.
Lee-Ann Coleman of the British Library (who hosted the day at their Conference Centre) discussed Open Access and posed the question "does access make it accessible?". Sara Ellis of the Association of Medical Research Charities reminded us that involving patients at all stages is not always easy and may require organisational cultural change. She also made the extremely important point that involvement must be meaningful and not just tokenistic. This last point chimed with the experience I have had over the last c15 years working in the disability sector.
Melanie Welham from the University of Bath concluded the first part of the Workshop with a consideration of the barriers faced by both patient and academic communities and made the point that better communication leads to wider participation.
After that we moved to smaller working groups to think through the needs of the various groups who access biomedical information, including a discussion on why and how they accessed it. This took some time and was discussed in considerable detail. At the end of the time each workshop came up with a set of key recommendations. These included things like the need to produce clear lay summaries that include things such as any uncertainty in the information and the context within which the research had been done, lay involvement, information formats and open access to information in various layers of detail. Thought was given as to how this could be achieved with further recommendations such as a set of guidelines for producing the lay summaries.
After the recommendations from each group had been fed back there were final presentations from Graham Steel, who is a patient advocate, and from Simon Denegri, chair of Involve. Graham Steel emphasised the use of modern technologies, while Simon Denegri mentioned the new contract the research comminity has with society and the fact that lay summaries can bring the science alive.
The project is ongoing and will continue its work aiming to bridge the gap in access to and understanding of biomedical and health information and research. It is clearly a worthwhile project which should open up the availability of scientific research to a wider community.
Monday, 13 June 2011
My Other Life ?
Picking up the idea of My Other Life suggested by Journeying Beyond Breast Cancer, I don't think I would say that I have another life. For me, the whole point of life In the Land of New Normal is that following diagnosis and the immediate treatment I am (like many others) getting back to my everyday life but that as a result of the cancer some things have changed. Some of the everyday life gets written about in this blog, but admittedly not all that much as yet.
So readers of my blog will know that I enjoy walking and needlework, am interested in chemistry (thanks to my late father) and that I have recently taken up curling. From other social networking, people may know that I am involved with medieval textiles and living history. What many don't know is just how obsessed I am with a particular group of late medieval businesswomen. So obsessed in fact, that I have an address book full of the names and locations of over 250 women who have been dead for between 400 and 700 years.
A barrister by profession, I now work for a third sector disability organisation where I run an advocacy service. Highly rewarding and totally absorbing work for a charity with some very thoughtful and supportive trustees.
I love reading and music; I played in my school, university and county youth orchestras, but mainly only listen these days. I don't know where I would be without my iPod enabling me to take so much music everywhere I go. I prefer live theatre to film and have been known to go to performances of Shakespeare by both the Royal Shakespeare Company and the local amateur society in the same week, thoroughly enjoying both.
Early this year, spurred on by the need for more weight bearing exercise, I joined an Egyptian dance class. I'm not very good, but am loving it. It is a very different style of dance from the reels and country dances I learnt growing up in Perthshire!
Something I am absolutely no good at is drawing. People have been known to fight over who has to have me in their team for a game of Pictionary!
I don't do as much cooking as I used to. I've never been all that keen on the "what shall we eat tonight" type of cooking, but love what I call production cooking. By which I mean multi-course dinner parties, with days of preparation and the opportunity to bring out the good table linen, china, cutlery and glasses . There doesn't seem to have been much time for that in my life for a good few years now, but I still enjoy it when I get the chance.
That is a bit more about my life and I'm sure that more will appear from time to time in the blog. Almost certainly there will be new experiences that get a mention. There may be passing references to places I've visited in the past (such as the disused quarry where I was fossil hunting by torchlight with my geology class when I found my first trilobite). Possibly there will be reminiscences - did I tell you about the time I was in the post office and it was held up in an armed robbery???
Oh yes, one more thing - we may live on opposite sides of the world today, but fellow blogger the Feisty Blue Gecko and I were at school together!
So readers of my blog will know that I enjoy walking and needlework, am interested in chemistry (thanks to my late father) and that I have recently taken up curling. From other social networking, people may know that I am involved with medieval textiles and living history. What many don't know is just how obsessed I am with a particular group of late medieval businesswomen. So obsessed in fact, that I have an address book full of the names and locations of over 250 women who have been dead for between 400 and 700 years.
A barrister by profession, I now work for a third sector disability organisation where I run an advocacy service. Highly rewarding and totally absorbing work for a charity with some very thoughtful and supportive trustees.
I love reading and music; I played in my school, university and county youth orchestras, but mainly only listen these days. I don't know where I would be without my iPod enabling me to take so much music everywhere I go. I prefer live theatre to film and have been known to go to performances of Shakespeare by both the Royal Shakespeare Company and the local amateur society in the same week, thoroughly enjoying both.
Early this year, spurred on by the need for more weight bearing exercise, I joined an Egyptian dance class. I'm not very good, but am loving it. It is a very different style of dance from the reels and country dances I learnt growing up in Perthshire!
Something I am absolutely no good at is drawing. People have been known to fight over who has to have me in their team for a game of Pictionary!
I don't do as much cooking as I used to. I've never been all that keen on the "what shall we eat tonight" type of cooking, but love what I call production cooking. By which I mean multi-course dinner parties, with days of preparation and the opportunity to bring out the good table linen, china, cutlery and glasses . There doesn't seem to have been much time for that in my life for a good few years now, but I still enjoy it when I get the chance.
That is a bit more about my life and I'm sure that more will appear from time to time in the blog. Almost certainly there will be new experiences that get a mention. There may be passing references to places I've visited in the past (such as the disused quarry where I was fossil hunting by torchlight with my geology class when I found my first trilobite). Possibly there will be reminiscences - did I tell you about the time I was in the post office and it was held up in an armed robbery???
Oh yes, one more thing - we may live on opposite sides of the world today, but fellow blogger the Feisty Blue Gecko and I were at school together!
Friday, 3 June 2011
The Patient's Voice
A couple of weeks ago I was at the Association of Breast Surgery's conference in Manchester. I had intended to post about it before but seem to have been incredibly busy.
I was there with the Independent Cancer Patient's Voice (ICPV), an organisation that aims to bring the patient's voice into clinical trials; which liaises with researchers and encourages, trains and supports patients to get involved. We had a stand in the exhibition and spent the conference networking and attending sessions. It was an excellent opportunity to hear about new developments and catch up on new and existing trials and research.
Perhaps the most controversial development that was presented was the 23 Hour Pathway - in effect day surgery but with a possible overnight stay for all non-reconstructive surgery. While this is, in effect, what happens with great success for many people at the moment, there was some considerable disquiet at the thought of it becoming standard.
There were several reasons for the disquiet. One was a fear of complications and one surgeon pointed out that she operates on a Friday which would mean less back-up being available for a patient at home the day after surgery. Another point raised was that some people's circumstances don't lend themselves to day surgery and if it was standard that might be overlooked. There was a fear that if day surgery is routine it might be seen to imply that it was minor surgery whereas it is usually only the starting point of a potentially difficult treatment process with emotional and psychological impact. It was also pointed out that less time in hospital might make it impossible for Breast Care Nurses and physios to see patients and check on them after their surgery, with a possible detrimental effect on physical and psychological recovery.
ICPV had previously held a study day that included this topic and had produced a briefing paper so we were able to hand this to visitors to our stand as well as to feed into the discussion. It looks likely that this will be rolled out nationally but hopefully the concerns will be noted and the process modified where necessary to take these into account.
Personally I was very pleased to be discharged after slightly more than 23 hours and a night in hospital. But I was also glad that there had been time for my BCN to visit me before surgery and again the next day, and that I had a visit from the physio to check that I knew how and when to do the exercises.
I was there with the Independent Cancer Patient's Voice (ICPV), an organisation that aims to bring the patient's voice into clinical trials; which liaises with researchers and encourages, trains and supports patients to get involved. We had a stand in the exhibition and spent the conference networking and attending sessions. It was an excellent opportunity to hear about new developments and catch up on new and existing trials and research.
Perhaps the most controversial development that was presented was the 23 Hour Pathway - in effect day surgery but with a possible overnight stay for all non-reconstructive surgery. While this is, in effect, what happens with great success for many people at the moment, there was some considerable disquiet at the thought of it becoming standard.
There were several reasons for the disquiet. One was a fear of complications and one surgeon pointed out that she operates on a Friday which would mean less back-up being available for a patient at home the day after surgery. Another point raised was that some people's circumstances don't lend themselves to day surgery and if it was standard that might be overlooked. There was a fear that if day surgery is routine it might be seen to imply that it was minor surgery whereas it is usually only the starting point of a potentially difficult treatment process with emotional and psychological impact. It was also pointed out that less time in hospital might make it impossible for Breast Care Nurses and physios to see patients and check on them after their surgery, with a possible detrimental effect on physical and psychological recovery.
ICPV had previously held a study day that included this topic and had produced a briefing paper so we were able to hand this to visitors to our stand as well as to feed into the discussion. It looks likely that this will be rolled out nationally but hopefully the concerns will be noted and the process modified where necessary to take these into account.
Personally I was very pleased to be discharged after slightly more than 23 hours and a night in hospital. But I was also glad that there had been time for my BCN to visit me before surgery and again the next day, and that I had a visit from the physio to check that I knew how and when to do the exercises.
Wednesday, 4 May 2011
A long way in two years
This time two years ago I was on holiday following my post-radiotherapy check-up. I was feeling encouraged by a positive appointment and had booked a few days in the Yorkshire Dales at a HF Holidays house. I opted to do my own thing rather than book on the guided walks because I knew that I wouldn't be up to a whole day of walking. This turned out to be a wise decision because not only did I tire after a short distance but my rucksack pulled on the surgery scar. However, it was no trouble to amuse myself in such a beautiful area and being back at the house before everyone else meant that I had the swimming pool to myself!
It was a bit frustrating not being able to do a decent walk because walking has been something I have always enjoyed, but I reminded myself that it was early days yet. Sure enough, as time went on I was able to build up to some shortish walks and the 7 mile walk I did with a friend that autumn was a great encouragement. But then I seemed to get stuck. Anything over 8 miles left me struggling and totally exhausted for the next few days. Until Monday.
On Monday, with sunny but not hot weather I took a look at the local OS Explorer map and planned a route that gave me several options along the way. Then I packed my rucksack (a better one these days!) and set off over the footpaths and green lanes around the local farmland and villages. I took it at a steady pace with plenty of stops to admire the butterflies and take the odd photograph or two.
By lunchtime I was still feeling fine and, looking at the map, I decided that I might even manage the extended version of the walk. Refreshed by the picnic I set off again and did indeed extend it, putting in a few extra miles and being rewarded by crossing a field with sheep and lambs who were unusually curious and didn't just run off as I approached.
Back home I looked at the map again and calculated how far I'd walked - just over 11.5 miles. Further by a good deal than I have managed in the last couple of years. Yes, I was very tired that night and was in bed early not only on Monday but also on Tuesday, and no, it is still nowhere near what I would have done before cancer, but it was very satisfying and encouraging.
Fatigue is still an issue for me and I can't dash from one thing to another the way I used to, but I know that I have come a long way since I struggled to do a few miles in the Dales two years ago.
It was a bit frustrating not being able to do a decent walk because walking has been something I have always enjoyed, but I reminded myself that it was early days yet. Sure enough, as time went on I was able to build up to some shortish walks and the 7 mile walk I did with a friend that autumn was a great encouragement. But then I seemed to get stuck. Anything over 8 miles left me struggling and totally exhausted for the next few days. Until Monday.
On Monday, with sunny but not hot weather I took a look at the local OS Explorer map and planned a route that gave me several options along the way. Then I packed my rucksack (a better one these days!) and set off over the footpaths and green lanes around the local farmland and villages. I took it at a steady pace with plenty of stops to admire the butterflies and take the odd photograph or two.
By lunchtime I was still feeling fine and, looking at the map, I decided that I might even manage the extended version of the walk. Refreshed by the picnic I set off again and did indeed extend it, putting in a few extra miles and being rewarded by crossing a field with sheep and lambs who were unusually curious and didn't just run off as I approached.
Back home I looked at the map again and calculated how far I'd walked - just over 11.5 miles. Further by a good deal than I have managed in the last couple of years. Yes, I was very tired that night and was in bed early not only on Monday but also on Tuesday, and no, it is still nowhere near what I would have done before cancer, but it was very satisfying and encouraging.
Fatigue is still an issue for me and I can't dash from one thing to another the way I used to, but I know that I have come a long way since I struggled to do a few miles in the Dales two years ago.
Thursday, 14 April 2011
Ready to Swim in Deeper Waters
I had my regular 6 monthly oncology check up yesterday. It is now two years since I finished the acute stage of treatment. I'm delighted to say that all appears to be well.
The "how are you doing?" conversation, which starts as I enter, always carries on while I'm undressing for the 'grope and poke' with which the consultation starts. I'm not sure if he does this to save time or whether he feel it helps dispel any awkwardness that might be felt. Whatever the reason it seems a businesslike approach that works for me. Afterwards he always tells me to take my time getting re-dressed and shuts the door, going back into his office - presumably to have another quick squint at my notes before I get settled into asking questions!
We spent some time discussing how I'm doing on Aromasin and going through the results of my bone density scan. In spite of some ominous rumblings in the letter he sent me back in November with the scan results, it seems that he isn't too worried about that. As I'm now on a weekly bisphosphonate that I seem to be "tolerating well" (and 'tolerating' is probably a highly appropriate word here!), he is happy for me to continue on Aromasin until the five years are up. I'm very happy with this. Although my joints are much stiffer and ache more, my hair is thinning and there are other side effects, I'm feeling so much better in myself than I was on tamoxifen.
But the Big Story is that he feels I can go from 6 monthly oncology checks plus annual mammogram and check up down to a single annual check-up next year. And as the surgical team does the mammogram and subsequent check up, he doesn't plan to see me again. He did make it clear that he isn't dropping out of my follow up care completely as he will liaise with my surgeon before and after my appointments. But yesterday there was no orange form for me to drop in the box at reception as I left; the form that tells the clinic secretary that another appointment is to be made.
I'm left slightly torn between two emotions. The stronger is my delight that he feels it is safe for me to drop to annual check ups, not to mention the less frequent anticipatory anxiety. At the same time, it is a bit scary. It isn't that I feel in any way that I'm being abandoned and I know that the door is open should I need to return. It is just that there is now less of a safety net, and possibly that I'm now taking back more responsibility for monitoring myself. On balance I'm actually very pleased.
As we shook hands and the end of the consultation and hoped (in the nicest possible way) not to see each other again, I was aware of a nervous thrill at the fact that I am now moving away from paddling in the shallow water lapping at the shores of the island that is diagnosis and treatment. Instead I am starting to swim in the deeper waters of the sea that takes me to the land of New Normal.
The "how are you doing?" conversation, which starts as I enter, always carries on while I'm undressing for the 'grope and poke' with which the consultation starts. I'm not sure if he does this to save time or whether he feel it helps dispel any awkwardness that might be felt. Whatever the reason it seems a businesslike approach that works for me. Afterwards he always tells me to take my time getting re-dressed and shuts the door, going back into his office - presumably to have another quick squint at my notes before I get settled into asking questions!
We spent some time discussing how I'm doing on Aromasin and going through the results of my bone density scan. In spite of some ominous rumblings in the letter he sent me back in November with the scan results, it seems that he isn't too worried about that. As I'm now on a weekly bisphosphonate that I seem to be "tolerating well" (and 'tolerating' is probably a highly appropriate word here!), he is happy for me to continue on Aromasin until the five years are up. I'm very happy with this. Although my joints are much stiffer and ache more, my hair is thinning and there are other side effects, I'm feeling so much better in myself than I was on tamoxifen.
But the Big Story is that he feels I can go from 6 monthly oncology checks plus annual mammogram and check up down to a single annual check-up next year. And as the surgical team does the mammogram and subsequent check up, he doesn't plan to see me again. He did make it clear that he isn't dropping out of my follow up care completely as he will liaise with my surgeon before and after my appointments. But yesterday there was no orange form for me to drop in the box at reception as I left; the form that tells the clinic secretary that another appointment is to be made.
I'm left slightly torn between two emotions. The stronger is my delight that he feels it is safe for me to drop to annual check ups, not to mention the less frequent anticipatory anxiety. At the same time, it is a bit scary. It isn't that I feel in any way that I'm being abandoned and I know that the door is open should I need to return. It is just that there is now less of a safety net, and possibly that I'm now taking back more responsibility for monitoring myself. On balance I'm actually very pleased.
As we shook hands and the end of the consultation and hoped (in the nicest possible way) not to see each other again, I was aware of a nervous thrill at the fact that I am now moving away from paddling in the shallow water lapping at the shores of the island that is diagnosis and treatment. Instead I am starting to swim in the deeper waters of the sea that takes me to the land of New Normal.
Wednesday, 23 February 2011
Celebrating Friendship
Last year I started thinking about making a Friendship Quilt for the Storm Riders. This group of women came together online in late 2008 and since then have supported, and continue to support, each other through the storm of breast cancer diagnosis, treatment and moving beyond into the land of New Normal. In part this was done through a frontier-style scenario so the making of a quilt seemed to me a suitably fitting way to celebrate and commemorate our friendship.
I rejected as impractical one traditional method of constructing such a quilt; that of each person piecing her chosen block to a given size and then collecting and assembling them. Instead I have asked each person to sign a square and then I will embroider the signatures and piece them into a quilt.
Contrary to all the advice given in quiltmaking books, I did not start by planning out the design. This was primarily because I wasn't sure just how many would be returned to me ... What I did do was to use the idea as an excuse to visit my local textile craft shop, which specialises in patchwork and quilting supplies. I then had a thoroughly enjoyable time selecting a series of fabrics that seemed to be in keeping with the scenario, including a pale one for the signatures. I suspect I won't use all those I bought but there were a couple that I just couldn't resist!
Whenever a few of us have been meeting I have taken along squares to be signed and am posting out others to people I'm less likely to see. Fortunately the idea has been received with some enthusiasm on the part of most people. I started embroidering the first batch when I was on holiday last year. Obviously the precious squares travelled in my hand luggage while the needles and scissors went in the checked baggage.
This is a long-term project and one of many occupying my time so it will be a while before it is completed. The Aromasin makes my hands rather stiff at times and so all handwork now takes longer than it used to take. It is, however, a most enjoyable project and it feels a lovely way in which to celebrate an amazing group of women.
I rejected as impractical one traditional method of constructing such a quilt; that of each person piecing her chosen block to a given size and then collecting and assembling them. Instead I have asked each person to sign a square and then I will embroider the signatures and piece them into a quilt.
Contrary to all the advice given in quiltmaking books, I did not start by planning out the design. This was primarily because I wasn't sure just how many would be returned to me ... What I did do was to use the idea as an excuse to visit my local textile craft shop, which specialises in patchwork and quilting supplies. I then had a thoroughly enjoyable time selecting a series of fabrics that seemed to be in keeping with the scenario, including a pale one for the signatures. I suspect I won't use all those I bought but there were a couple that I just couldn't resist!
Whenever a few of us have been meeting I have taken along squares to be signed and am posting out others to people I'm less likely to see. Fortunately the idea has been received with some enthusiasm on the part of most people. I started embroidering the first batch when I was on holiday last year. Obviously the precious squares travelled in my hand luggage while the needles and scissors went in the checked baggage.
This is a long-term project and one of many occupying my time so it will be a while before it is completed. The Aromasin makes my hands rather stiff at times and so all handwork now takes longer than it used to take. It is, however, a most enjoyable project and it feels a lovely way in which to celebrate an amazing group of women.
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