Rudely Interrupted
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Where to start? I am not really sure. Probably the best place to start is how I came to know what I now know. That my breast cancer has returned. The last time I wrote this blog I described how I explained my diagnosis to my children. I drew a line – which represented not so bad at one end and very bad at the other end and explained how lucky I was because while getting a breast cancer diagnosis was not good, I was lucky because I was pretty much close to the very end of the not so bad end of the line. The tumour was 1.9mm, grade 2, no lymph node involvement and no vascular invasion (sign of the tumour making its own blood source). My oncologist indicated that not having chemo was certainly an option. But at the time, with the children between 7 and 13, I chose chemo. I did not want to find myself, where I am today, imagining I could have avoided it, if only I had had the chemo. But it came back anyway. I was in my 5th year post diagnosis.
I am now at the other end of that line. But what I am learning is that the end of the line is unknown. That advanced breast cancer is a game of cat and mouse. That it is described as advanced, not terminal, because at this point in the game who knows where the end is. And this is where my journey is taking me. Who really knows when the end is? What was my future? I simply don’t know and I never did. It was a series of aspirations. Imagined scenarios. Certainly how you imagine your future influences how you live your life today, in an attempt to move you closer in that direction. But the unpredictable has a way of interrupting the very best of plans. And so my blog is changing its name. For this round two it will be called - Rudely Interrupted. There is no other way to describe it.
Since September last year work has been absolutely full on exhausting. In October alone I visited Mwanza in Tanzania, Kano, Nigeria and Seattle. I was drawn into the Ebola crisis in Sierra Leone on the back of our work to reduce maternal and newborn mortality there. This involved inhumane deadlines for proposals to support the laboratory system in Sierra Leone and start implementation almost over night (as well as over Christmas), followed by another rapid turn around proposal to establish community care centres as part of the UKAID response. The proposal went ahead and the time and energy that required, but in the end the tender was dropped despite the level of effort to design an emergency response in a very short timeframe. I love my work and the period from September to January is always super busy but this stretch hit me hard. I never really recovered from the travel in October and took this as the impact of the travel, time zones, impact on family and simply load of work. But perhaps I was already fighting a battle inside that I did not know about. The first outward symptom was sore, sensitive and incredibly dry skin – all over my body, not just on my face or arms. In November Rupert and I went out for dinner with neighbours and that evening it seemed to move up my body to my face. I knew this was not just dry skin, it felt something systemic – I can’t say I imagined it was what it has turned out to be, but I certainly felt something wasn’t right. I went to the GP once before Christmas but with nothing much more than a non specific skin issue. It continued, getting better at times, over Xmas but it did not resolve itself. I went back to the GP and asked for blood tests. These came back ‘satisfactory’ and for a while I felt slightly relieved. But the skin issue did not resolve and I had lost my appetite for alcohol. I also had occasional heart burn. I was due to fly to Malawi and Zimbabwe, but the day before leaving my skin was particularly bad and I wondered if I even had a temperature. The last thing I could do was travel across Africa with a temperature. There are ebola checks at every boarder (these basically involve filling out a form and having your temperature taken). I did not want to get stuck on one of the many change overs with a temperature. So I cancelled the trip last minute. I went back to the GP for a letter for insurance but also asked if he could refer me somewhere else as I was not happy – something was going on. So he sent me to a gastroenterologist who booked me an endoscopy and then an ultra sound.
The endoscopy, which I had with no drugs (yuch), showed slight inflammation of my duodenum. Again, for a short while, I felt relieved, I had a possible explanation for what was going on. I wanted to fit the puzzle together and this sounded a good way to go. Until I looked more into duodenum ulcers and realised that I had none of the underlying reasons (the HP bacterium which I was told I was negative for, and long term use of eg painkillers). I had some nagging doubt, but imagined that the gastroenterologist might have a reasonable explanation – you can’t find everything on the internet surely? So by the time I went for the ultrasound I was not really expecting anything in particular and imagined that he would already know what was going on , this was just to confirm it. So that evening (my appointment was at 5.30), Rupert was at work, coming back from London later as usual and the kids were at home, I was due to go back to give them supper. I went on my own.
I lay down, and after not very long time noticed the radiologist was not looking happy. I asked immediately what he could see, and in the same breath told him I had previously had breast cancer – a fact the gastroenterologist had failed to note on the referral. The radiologist, who subsequently did my liver biopsy, just came out with it. He was not happy with what he could see. He was a cancer radiologist and what he could see was what looked to him like breast metastases, salt and peppered through my liver.
I have always had a fear of the breast cancer coming back in my liver. And it had! It was so unreal. I almost started hyper ventilating, it was speed within which my reality had suddenly changed so dramatically. They located the hospital based breast care nurse (who I had known from previously) quite quickly and she came in to be with me. They kept asking if there was anyone I could call – but I simply couldn’t think who on earth I would call with that news, right then. Rupert would be on a train and telling him something like that as he sat far away from me on a crowded commuter train would have been cruel. I think I did in the end call him. The news was cruel. My oncologist happened to have a clinic that afternoon and they took me to him. He recorded the conversation, which I have not listened to again. It went something like this. Acknowledge that this is shocking news. This means that they will not be able to cure it but they will be able to treat it. There are all sorts of rungs on the treatment ladder and there are drugs he is using this year that were not available last year. I would start chemo therapy the following Thursday (10 days from then). He would use a drug called Pacitaxel. I would need a CT scan and after that I may have a liver biopsy so they can absolutely 100% confirm that it is breast cancer and they can be sure what its characteristics are, as this would determine subsequent treatment. The primary cancer had been oestrogen positive and he wanted to confirm that it still was. Cancer is a stealthy bastard and it can change and morph and it learns to become resistant to drugs and has been known to change even basic characteristics, like its hormone status.
I waited on a chair in the lobby of the hospital with the breast care nurse, clearly not happy to have me go home on my own. I called my elder sister Clare. Then I went home...
I am now at the other end of that line. But what I am learning is that the end of the line is unknown. That advanced breast cancer is a game of cat and mouse. That it is described as advanced, not terminal, because at this point in the game who knows where the end is. And this is where my journey is taking me. Who really knows when the end is? What was my future? I simply don’t know and I never did. It was a series of aspirations. Imagined scenarios. Certainly how you imagine your future influences how you live your life today, in an attempt to move you closer in that direction. But the unpredictable has a way of interrupting the very best of plans. And so my blog is changing its name. For this round two it will be called - Rudely Interrupted. There is no other way to describe it.
Since September last year work has been absolutely full on exhausting. In October alone I visited Mwanza in Tanzania, Kano, Nigeria and Seattle. I was drawn into the Ebola crisis in Sierra Leone on the back of our work to reduce maternal and newborn mortality there. This involved inhumane deadlines for proposals to support the laboratory system in Sierra Leone and start implementation almost over night (as well as over Christmas), followed by another rapid turn around proposal to establish community care centres as part of the UKAID response. The proposal went ahead and the time and energy that required, but in the end the tender was dropped despite the level of effort to design an emergency response in a very short timeframe. I love my work and the period from September to January is always super busy but this stretch hit me hard. I never really recovered from the travel in October and took this as the impact of the travel, time zones, impact on family and simply load of work. But perhaps I was already fighting a battle inside that I did not know about. The first outward symptom was sore, sensitive and incredibly dry skin – all over my body, not just on my face or arms. In November Rupert and I went out for dinner with neighbours and that evening it seemed to move up my body to my face. I knew this was not just dry skin, it felt something systemic – I can’t say I imagined it was what it has turned out to be, but I certainly felt something wasn’t right. I went to the GP once before Christmas but with nothing much more than a non specific skin issue. It continued, getting better at times, over Xmas but it did not resolve itself. I went back to the GP and asked for blood tests. These came back ‘satisfactory’ and for a while I felt slightly relieved. But the skin issue did not resolve and I had lost my appetite for alcohol. I also had occasional heart burn. I was due to fly to Malawi and Zimbabwe, but the day before leaving my skin was particularly bad and I wondered if I even had a temperature. The last thing I could do was travel across Africa with a temperature. There are ebola checks at every boarder (these basically involve filling out a form and having your temperature taken). I did not want to get stuck on one of the many change overs with a temperature. So I cancelled the trip last minute. I went back to the GP for a letter for insurance but also asked if he could refer me somewhere else as I was not happy – something was going on. So he sent me to a gastroenterologist who booked me an endoscopy and then an ultra sound.
The endoscopy, which I had with no drugs (yuch), showed slight inflammation of my duodenum. Again, for a short while, I felt relieved, I had a possible explanation for what was going on. I wanted to fit the puzzle together and this sounded a good way to go. Until I looked more into duodenum ulcers and realised that I had none of the underlying reasons (the HP bacterium which I was told I was negative for, and long term use of eg painkillers). I had some nagging doubt, but imagined that the gastroenterologist might have a reasonable explanation – you can’t find everything on the internet surely? So by the time I went for the ultrasound I was not really expecting anything in particular and imagined that he would already know what was going on , this was just to confirm it. So that evening (my appointment was at 5.30), Rupert was at work, coming back from London later as usual and the kids were at home, I was due to go back to give them supper. I went on my own.
I lay down, and after not very long time noticed the radiologist was not looking happy. I asked immediately what he could see, and in the same breath told him I had previously had breast cancer – a fact the gastroenterologist had failed to note on the referral. The radiologist, who subsequently did my liver biopsy, just came out with it. He was not happy with what he could see. He was a cancer radiologist and what he could see was what looked to him like breast metastases, salt and peppered through my liver.
I have always had a fear of the breast cancer coming back in my liver. And it had! It was so unreal. I almost started hyper ventilating, it was speed within which my reality had suddenly changed so dramatically. They located the hospital based breast care nurse (who I had known from previously) quite quickly and she came in to be with me. They kept asking if there was anyone I could call – but I simply couldn’t think who on earth I would call with that news, right then. Rupert would be on a train and telling him something like that as he sat far away from me on a crowded commuter train would have been cruel. I think I did in the end call him. The news was cruel. My oncologist happened to have a clinic that afternoon and they took me to him. He recorded the conversation, which I have not listened to again. It went something like this. Acknowledge that this is shocking news. This means that they will not be able to cure it but they will be able to treat it. There are all sorts of rungs on the treatment ladder and there are drugs he is using this year that were not available last year. I would start chemo therapy the following Thursday (10 days from then). He would use a drug called Pacitaxel. I would need a CT scan and after that I may have a liver biopsy so they can absolutely 100% confirm that it is breast cancer and they can be sure what its characteristics are, as this would determine subsequent treatment. The primary cancer had been oestrogen positive and he wanted to confirm that it still was. Cancer is a stealthy bastard and it can change and morph and it learns to become resistant to drugs and has been known to change even basic characteristics, like its hormone status.
I waited on a chair in the lobby of the hospital with the breast care nurse, clearly not happy to have me go home on my own. I called my elder sister Clare. Then I went home...