When all this started, about six weeks ago, I was totally certain that I was going to be told that I had a bog-standard breast cancer (adenocarcinoma to the initiated) which is what my mother, my aunt, my paternal grandmother and my cousin all had (and, no, I do not carry the cancer gene). When I went up for the initial biopsy results, they told me that I certainly did not have that, but they could not be sure exactly what it was or which cells it started from. To be honest, that was the closest I came throughout this saga to totally falling apart.
Surgery came and went. I was feeling much better and put thoughts of histology away for two weeks. As the results day approached, I must admit that I got a little tense, but my brother came up to be with me and that helped enormously. It turned out, when I got the results on Tuesday, that I have a very odd (and rare) kind of cancer that is made up of lots of different kinds of cells. Kindly, they photocopied the pathology report for me so that I could bring it home and study it.
Several hours of Google searching later, I realised that it was VERY rare. I could find no proper trials, just a few small case series. Nobody seems to know much about it. There were no estimates of how things were likely to go. This was strange. I had not expected this at all. To be honest, I didn't even know that these tumours existed in the breast.
So, today I met the oncologist for the first time, yet another kind, caring doctor, who let me ask all my many questions and never hinted that I was eating into her brief time for lunch. And it certainly is rare: less than 1% of all breast cancers! 'Trust me', I thought, 'I can't do anything the normal way'. Of course, this has interesting implications, not least that nobody really knows the best way to treat it. So, we shall try everything: chemotherapy next, then radiotherapy. Fortunately for me, the nodes and margins were clear, so no further surgery is needed. I did ask if there were any experts anywhere in the world: the doctor said she would investigate. I did say that if she could find me one in Rome, I would be happy for the NHS to fund my treatment there. She laughed.
I must remember to tell her that if she writes me up, I want my name on the paper - at least I can achieve that one of my work objectives for the year!
Thursday 25 July 2013
Saturday 20 July 2013
The Importance of Silence
These last two weeks I have been rediscovering the importance of silence. Forgive me if this sound a bit like a sermon: if it is not your thing, please leave the rest. However, although for me it is at least partly religious, I think the principle holds even for the totally secular. Let me expound.
For the last many years (and I am not sure how many) my life has been noisy. I wake up to the Today Programme on Radio 4; the radio is permanently on if I am alone at home or in the car; in the evening I play music, or computer games. I entertain a lot: I like company but prefer to be at home, so I have people round to supper. I am a good, if not spectacular, cook, and I keep a tolerable cellar (i.e. a wine rack in the dining room!). The odd disaster can always be binned and curry sent for. Essentially, when I am awake, I am working, conversing, listening to the radio, or playing computer games. Silence was there none. Confession time: I even take my iPhone and iPad to the bathroom so that I can do emails/play scrabble with friends in that time.
Suddenly, I was ill. This wasn't a cold; this was serious. The days before the operation were filled with noise: people were here, my head was full of confusion, I could not think properly. Chronic pain is debilitating. Chronic pain mixed with terror and emotional overload even more so. For the three weeks between convincing myself I had to see the GP and the hospital appointment, I am not sure that I did anything sensible at all. Emails were read but not understood, I was emotionally labile (i.e. I wanted to curl up in a ball and cry) but was determined to pretend nothing was happening in case it turned out to be something else. I apologise to everybody for the shoddy work and things I missed. Once I knew, there was white noise in my head, fighting my every instinct to act normally.
Then it was over. The operation was done. I was home. Five days later, the drains came out. People came and went, still there was noise, but gradually it quietened. Then, amazingly, came the first evening I was completely alone - just me and Molly Cat. The first night I was sleeping in the house with nobody in the spare bedroom.
I hope this does not sound ungrateful. I cannot tell you how grateful I am for all the care and attention; how much I needed people with me and the safety net that provided. I could not cope alone at even the most basic level: I could not get the sexy socks on alone, lifting a kettle was difficult, I did not dare get into a bath if there was nobody else in the house. But, suddenly, it was right that I needed a little time alone. And it was a little time: a friend left at 9p.m. and was back at 10 the following morning. But that time was important. I was reclaiming my space and myself.
And it was then that I realised that I did not want noise all the time. I wanted quiet time. Time to reflect and, in my case, to pray. Time to consider what had happened and how I had reacted to it. Time to realise that there are more important things than emails and computer games. Time, above all, to realise that, despite the difficulties, there is cause to be grateful in this, because I am re-learning the fact that there are more important things in life. I have sat and pondered this paradox much: should I be grateful/happy that this has happened because it has put my life into perspective? I don't know. But I do know that I shall continue to meditate on this and that it might yield one or two insights.
In the mean time, I am starting to read my work emails again - a girl can be too good!!!
For the last many years (and I am not sure how many) my life has been noisy. I wake up to the Today Programme on Radio 4; the radio is permanently on if I am alone at home or in the car; in the evening I play music, or computer games. I entertain a lot: I like company but prefer to be at home, so I have people round to supper. I am a good, if not spectacular, cook, and I keep a tolerable cellar (i.e. a wine rack in the dining room!). The odd disaster can always be binned and curry sent for. Essentially, when I am awake, I am working, conversing, listening to the radio, or playing computer games. Silence was there none. Confession time: I even take my iPhone and iPad to the bathroom so that I can do emails/play scrabble with friends in that time.
Suddenly, I was ill. This wasn't a cold; this was serious. The days before the operation were filled with noise: people were here, my head was full of confusion, I could not think properly. Chronic pain is debilitating. Chronic pain mixed with terror and emotional overload even more so. For the three weeks between convincing myself I had to see the GP and the hospital appointment, I am not sure that I did anything sensible at all. Emails were read but not understood, I was emotionally labile (i.e. I wanted to curl up in a ball and cry) but was determined to pretend nothing was happening in case it turned out to be something else. I apologise to everybody for the shoddy work and things I missed. Once I knew, there was white noise in my head, fighting my every instinct to act normally.
Then it was over. The operation was done. I was home. Five days later, the drains came out. People came and went, still there was noise, but gradually it quietened. Then, amazingly, came the first evening I was completely alone - just me and Molly Cat. The first night I was sleeping in the house with nobody in the spare bedroom.
I hope this does not sound ungrateful. I cannot tell you how grateful I am for all the care and attention; how much I needed people with me and the safety net that provided. I could not cope alone at even the most basic level: I could not get the sexy socks on alone, lifting a kettle was difficult, I did not dare get into a bath if there was nobody else in the house. But, suddenly, it was right that I needed a little time alone. And it was a little time: a friend left at 9p.m. and was back at 10 the following morning. But that time was important. I was reclaiming my space and myself.
And it was then that I realised that I did not want noise all the time. I wanted quiet time. Time to reflect and, in my case, to pray. Time to consider what had happened and how I had reacted to it. Time to realise that there are more important things than emails and computer games. Time, above all, to realise that, despite the difficulties, there is cause to be grateful in this, because I am re-learning the fact that there are more important things in life. I have sat and pondered this paradox much: should I be grateful/happy that this has happened because it has put my life into perspective? I don't know. But I do know that I shall continue to meditate on this and that it might yield one or two insights.
In the mean time, I am starting to read my work emails again - a girl can be too good!!!
Saturday 13 July 2013
I am a computer addict
Just over a week post-op and I cannot believe how well things are going. Here I am, sitting at home, at my laptop, in a fetching Kaftan and really sexy socks [NOT - THEY ARE THE BIGGEST PROBLEM - SO HOT], with a glass of wine and a grumpy cat (don't ask!), and feeling fine. I have not needed any paracetomol all day, I have virtually regained full use of my arm, the wound is healing and stings little and intermittently, and today I went to Mass, which was lovely and made me feel very loved.
All of this is wonderful, but there is also much else to be grateful for. When I first came home, I was rushing to the computer at every possible moment. I truly had not realised how wedded I was to all my electronic gadgets. The iPhone and iPad never left my side; if I was too sore for the iMac, I used the MacBook Air; the first thing I did every morning was surf all the gadgets. Rapidly, however, it became clear that with all my work emails not coming through (for which I have to thank all my work colleagues) there was little for me to do. I tried responding to the few that came through - they were ignored.
Bereft, I turned to computer games, but my arm was too sore for long stints, and suddenly I realised that they were actually rather boring. What to do? Listlessly, I picked up one of the books from my unread book pile.
I am horrified to say that it took me two days to finish it. My reading speed has severely deteriorated. But it will get better. I am now on my third book, and have started doing what I used to do - read a different book in each room! I am happy to report that I reach for a book before a computer and it was only the thought that I had abandoned this blog for a number of days that brought me back today.
So, dear friends, being ill is not unalloyed joy, but it has some things to recommend it. I have to report that I have a silly smile on my face.
God bless you all. Please keep me in your prayers.
All of this is wonderful, but there is also much else to be grateful for. When I first came home, I was rushing to the computer at every possible moment. I truly had not realised how wedded I was to all my electronic gadgets. The iPhone and iPad never left my side; if I was too sore for the iMac, I used the MacBook Air; the first thing I did every morning was surf all the gadgets. Rapidly, however, it became clear that with all my work emails not coming through (for which I have to thank all my work colleagues) there was little for me to do. I tried responding to the few that came through - they were ignored.
Bereft, I turned to computer games, but my arm was too sore for long stints, and suddenly I realised that they were actually rather boring. What to do? Listlessly, I picked up one of the books from my unread book pile.
I am horrified to say that it took me two days to finish it. My reading speed has severely deteriorated. But it will get better. I am now on my third book, and have started doing what I used to do - read a different book in each room! I am happy to report that I reach for a book before a computer and it was only the thought that I had abandoned this blog for a number of days that brought me back today.
So, dear friends, being ill is not unalloyed joy, but it has some things to recommend it. I have to report that I have a silly smile on my face.
God bless you all. Please keep me in your prayers.
Saturday 6 July 2013
How to Survive the Pre-operative Period
Three days post-op and I'm getting a little bored. This is largely because the drains are still in, so I am relatively immobile and can't do all the things I want to do. Fortunately, there is Wimbledon and the drains come out on Monday. However, I thought I would entertain you with the pre-operative period.
First let me say that nothing I am going to write detracts AT ALL from what I said about how wonderful the NHS is. I told you I would milk it, and I intend to, but none of the little hiccoughs actually made any difference to the care I received.
I was given the diagnosis by my wonderful consultant on the Friday. It was, of course, a shock, particularly since they did not know what the cancer was (and still don't). Foolishly, I had gone alone, convinced that I had a bog standard adenocarcinoma of the breast and that I could handle that. I rather fell apart, I'm afraid. They were exemplary, explaining, gentling, leaving a nurse with me at all times. By the time I left to come home I had a date and time for my CT scan (Monday at 13.15, carefully written down for me by the breast care nurse so that I would not be confused), a date and time for the results of the CT scan, and a date for surgery.
On the way home, I phoned a friend we shall designate as R. I needed somebody there. He was there within half an hour. We played outdoing the gallows humour all afternoon and evening, and had a rather boozy supper. However, before all that, about an hour after I got home, the phone went. It was the CT department.
Things moved on. The only thing I as still waiting for was the pre-operative assessment appointment. Eventually, it turned up: for 08.15 the day before surgery. I am not good in the mornings, and the thought of having to be at the hospital that early the day before I had to be there at 0700 for the surgery was uninviting. I rang up. Would it be possible for me to go later in the day, since I live alone and getting there that early was going to present a problem?
The pre-operative period is a roller-coaster ride: up one minute, down the next. You need lots of company and friends, but no fuss. You need a lot of sympathy, but none of it overt. You also need space, and peace and quiet. I also needed to pray. Above all, I needed people to take charge. I needed them to tell me what came next. The most reassuring words to me, spoken by many a professional in the last few weeks, are "I am going to treat you just like any other patient, because that's my job."
Once again I say, the NHS is a treasure. Do not let us lose it.
First let me say that nothing I am going to write detracts AT ALL from what I said about how wonderful the NHS is. I told you I would milk it, and I intend to, but none of the little hiccoughs actually made any difference to the care I received.
I was given the diagnosis by my wonderful consultant on the Friday. It was, of course, a shock, particularly since they did not know what the cancer was (and still don't). Foolishly, I had gone alone, convinced that I had a bog standard adenocarcinoma of the breast and that I could handle that. I rather fell apart, I'm afraid. They were exemplary, explaining, gentling, leaving a nurse with me at all times. By the time I left to come home I had a date and time for my CT scan (Monday at 13.15, carefully written down for me by the breast care nurse so that I would not be confused), a date and time for the results of the CT scan, and a date for surgery.
On the way home, I phoned a friend we shall designate as R. I needed somebody there. He was there within half an hour. We played outdoing the gallows humour all afternoon and evening, and had a rather boozy supper. However, before all that, about an hour after I got home, the phone went. It was the CT department.
"We need to make an appointment for your CT scan" said the voice at the other end.
"But I already have an appointment", I said, and read out the date and time on my piece of paper, which I had already shown to R who had agreed to take me.
"No you don't" was the firm reply. "I have nothing on the system. We can see you on Monday at 16.30"Having confirmed with R that he could make that, I agreed and amended the details. However, you will understand that my brain was not at its best. Although I put 16.30 into my diary, my head registered 6p.m. Monday duly arrived and I checked my diary. I was amazed at the time I had put down. That wasn't right. I was sure it was 6. Eventually, I rang the department at about 2p.m. to double check.
"But we were expecting you half an hour ago" said the voice.I have never been so grateful that I had had a witness. Otherwise I would have thought that I was going mad. Happily, they could do me at 16.30 and it all went ahead.
Things moved on. The only thing I as still waiting for was the pre-operative assessment appointment. Eventually, it turned up: for 08.15 the day before surgery. I am not good in the mornings, and the thought of having to be at the hospital that early the day before I had to be there at 0700 for the surgery was uninviting. I rang up. Would it be possible for me to go later in the day, since I live alone and getting there that early was going to present a problem?
"I'm afraid not" said the voice at the other end. "You need to be at the Gynae. clinic since you are having a gynae. operation". PANIC.
"But I'm not" I bleated. "At least, not unless they forgot to tell me something."
"Oh. Just a minute." Long and scary pause. "Sorry, no that was our mistake. Yes, come at 1100 instead."It was at that point that I decided to arrive for surgery with a large placard saying 'Please only operate on my right breast'. Needless to say, this proved unnecessary.
The pre-operative period is a roller-coaster ride: up one minute, down the next. You need lots of company and friends, but no fuss. You need a lot of sympathy, but none of it overt. You also need space, and peace and quiet. I also needed to pray. Above all, I needed people to take charge. I needed them to tell me what came next. The most reassuring words to me, spoken by many a professional in the last few weeks, are "I am going to treat you just like any other patient, because that's my job."
Once again I say, the NHS is a treasure. Do not let us lose it.
Thursday 4 July 2013
A tribute to the NHS: Experience of a Surgical Cancer Ward
At last the waiting was over. After all the tests and unpleasantness, which I might get round to some time, I had to be on the ward at 0700 for surgery yesterday. My PA was on hand. She had slept here the night before, was taking me to the hospital and then returning to look after Molly Cat. So far so good.
The evening before (i.e. Tuesday) we had supper with a friend, but by eight I was exhausted and excused myself. I needed an early night. By nine I was asleep. Molly was in and out. She was clearly confused. I woke intermittently and by 2.30 a.m. was pretty much awake. Molly kept trying to get me to talk to her. By 5.30 there was no point in pretending any more. I got up, fed her, went to have my bath. Normally I am the person who cuts everything too fine, but I was too twitchy and nervous that morning. I could hardly bear to say goodbye to Molly. We left the house in a hurry at about 06.30.
On arrival, we were directed to the waiting room. Why do staff feel it necessary to have day-time television on at these times? I really did not wish to see the shenanigans of the special police, or the latest in house re-design. At last, my consultant arrived: she was kind and welcoming, and immediately took me to my room: wonderful surprise, I had my own room and toilet.
We went over the procedure again. I was consented for everything. The anaesthetist came. Every potential complication was explained. For the first time that day, I started to calm down. They were so obviously competent. Then they disappeared. Next step, Nuclear Medicine for the injection of the radioactive material for the sentinel node biopsy. Only problem, nobody had told me. I got the shakes again.
At last it was time. Gowned, tested and starved, I was wheeled to theatre by a cheerful porter. He chatted and made me laugh. He told me about the patient charter and how he 'had to be nice to patients these days'. He got me there rapidly and safely.
I shall gloss over the unpleasantness of the fact that my veins had shut down. Happily, I was not aware as the difficulties mounted in theatre and my blood pressure soared to 220. The next thing I remember is being in the Recovery Suite. It seemed like only minutes later that I was on my way back to the ward. That was about 4.30 p.m. yesterday. By 11.00 this morning, I was home. How did this miracle happen?
Firstly, I cannot praise the staff highly enough. Every individual felt professional, unrushed and competent. They explained, they offered support and they never tired of responding. Within minutes of being back, I was given a cup of tea in a beaker with a straw. They explained that I had had morphine in theatre. They explained the analgesia that had been written up. They told me about the drains, organised the bed, helped me to be comfortable. Within ten minutes, my brother and I were having a normal conversation and a good laugh.
Shorty thereafter, the consultant joined us. She had asked me previously if she could speak freely in front of my brother: she now confirmed this. She told us how the surgery had gone, what the next steps were and the timescales involved. As far as I could tell, she had nothing else to do that evening, although I knew that she had been there since eight that morning.
By now, my cheerfulness knew no bounds. No doubt, some of it was the morphine euphoria, and a lot of it was relief at the operation being over, but I was pain free, eating and drinking (they had kept a cheese sandwich for me to eat after 7 pm: how kind was that?) and, despite the discomfort of the two drains and the drips, I felt fine. My brother was amazed; a confirmed believer in private medicine, he was almost converted to the wonders of the NHS.
I will not bore you with more details, but suffice it to say that I needed no more than four paracetomols through the night, that my sheets were changed when I went to the bathroom, that the observations were carried out competently and quietly, and that I slept as well as could be expected. By 6.30, I was waiting to find out if I could go home. Three conditions had been set, and I had met them all, but the drains were pouring fluid and I was afraid that I would have to stay another night. Despite the kindness, I wanted to come home!!
The Consultant team was on the ward by 07.45. I was going to be allowed home. There was a list of things to do: 'what time can I go?' I asked, 'so that I can tell my brother'. About 10.00 they said. I was disbelieving. My recollection from my days as a hospital doctor was that patients rarely left the ward in the morning. Incredibly, by 10.00, my drips were down, I had been shown how to empty, measure and re-set my drains, I was dressed, I had all my letters and appointments and had fitted with a temporary prosthesis. I even had my sunglasses on when my brother arrived.
It is now coming towards eight in the evening. I am relaxed. I have had two more doses of paracetomol. I cannot believe how smoothly it has all gone. I know this will not last. I know there are rough waters ahead. But I have seen the best of our NHS and I want to pay tribute. We cannot let it die.
The evening before (i.e. Tuesday) we had supper with a friend, but by eight I was exhausted and excused myself. I needed an early night. By nine I was asleep. Molly was in and out. She was clearly confused. I woke intermittently and by 2.30 a.m. was pretty much awake. Molly kept trying to get me to talk to her. By 5.30 there was no point in pretending any more. I got up, fed her, went to have my bath. Normally I am the person who cuts everything too fine, but I was too twitchy and nervous that morning. I could hardly bear to say goodbye to Molly. We left the house in a hurry at about 06.30.
On arrival, we were directed to the waiting room. Why do staff feel it necessary to have day-time television on at these times? I really did not wish to see the shenanigans of the special police, or the latest in house re-design. At last, my consultant arrived: she was kind and welcoming, and immediately took me to my room: wonderful surprise, I had my own room and toilet.
We went over the procedure again. I was consented for everything. The anaesthetist came. Every potential complication was explained. For the first time that day, I started to calm down. They were so obviously competent. Then they disappeared. Next step, Nuclear Medicine for the injection of the radioactive material for the sentinel node biopsy. Only problem, nobody had told me. I got the shakes again.
At last it was time. Gowned, tested and starved, I was wheeled to theatre by a cheerful porter. He chatted and made me laugh. He told me about the patient charter and how he 'had to be nice to patients these days'. He got me there rapidly and safely.
I shall gloss over the unpleasantness of the fact that my veins had shut down. Happily, I was not aware as the difficulties mounted in theatre and my blood pressure soared to 220. The next thing I remember is being in the Recovery Suite. It seemed like only minutes later that I was on my way back to the ward. That was about 4.30 p.m. yesterday. By 11.00 this morning, I was home. How did this miracle happen?
Firstly, I cannot praise the staff highly enough. Every individual felt professional, unrushed and competent. They explained, they offered support and they never tired of responding. Within minutes of being back, I was given a cup of tea in a beaker with a straw. They explained that I had had morphine in theatre. They explained the analgesia that had been written up. They told me about the drains, organised the bed, helped me to be comfortable. Within ten minutes, my brother and I were having a normal conversation and a good laugh.
Shorty thereafter, the consultant joined us. She had asked me previously if she could speak freely in front of my brother: she now confirmed this. She told us how the surgery had gone, what the next steps were and the timescales involved. As far as I could tell, she had nothing else to do that evening, although I knew that she had been there since eight that morning.
By now, my cheerfulness knew no bounds. No doubt, some of it was the morphine euphoria, and a lot of it was relief at the operation being over, but I was pain free, eating and drinking (they had kept a cheese sandwich for me to eat after 7 pm: how kind was that?) and, despite the discomfort of the two drains and the drips, I felt fine. My brother was amazed; a confirmed believer in private medicine, he was almost converted to the wonders of the NHS.
I will not bore you with more details, but suffice it to say that I needed no more than four paracetomols through the night, that my sheets were changed when I went to the bathroom, that the observations were carried out competently and quietly, and that I slept as well as could be expected. By 6.30, I was waiting to find out if I could go home. Three conditions had been set, and I had met them all, but the drains were pouring fluid and I was afraid that I would have to stay another night. Despite the kindness, I wanted to come home!!
The Consultant team was on the ward by 07.45. I was going to be allowed home. There was a list of things to do: 'what time can I go?' I asked, 'so that I can tell my brother'. About 10.00 they said. I was disbelieving. My recollection from my days as a hospital doctor was that patients rarely left the ward in the morning. Incredibly, by 10.00, my drips were down, I had been shown how to empty, measure and re-set my drains, I was dressed, I had all my letters and appointments and had fitted with a temporary prosthesis. I even had my sunglasses on when my brother arrived.
It is now coming towards eight in the evening. I am relaxed. I have had two more doses of paracetomol. I cannot believe how smoothly it has all gone. I know this will not last. I know there are rough waters ahead. But I have seen the best of our NHS and I want to pay tribute. We cannot let it die.
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