Today I received some paperwork from the Healthcare at Home people, confirming that my Herceptin at home treatment is classified as 'palliative'. Three years ago, the p word would have set the world spinning for me, but now, I think, it frightens me less than a total discharge would have done - or do. Because I know now that one can never be totally discharged from this disease (it has such a nasty habit of biting back when least expected), palliative treatment, or care, which doesn't (necessarily) mean the end of the line but merely another means of living with the disease, seems a healthy way forward.
An acquaintance of mine also sent me a dog-eared newspaper clip, dating from 1983, about treatment choices, specifically whether or not to go ahead with a mastectomy in the case of the woman featured. She opted not to have the op, and my correspondent was wondering if she had survived. Twenty five years is a very long time in the story of cancer treatments, and many of the life saving (or life prolonging) drugs available readily now were simply unheard of then - like Herceptin, for instance. Before the discovery of this monoclonal antibody, there was no point in testing biopsy tissue to see whether women were Her2 positive or not - because, if they were, there was no treatment. Now there is, and I don't care whether is it palliative or not, as long as it works.
I remember sitting in the marble bathroom of the 5 star hotel in northern Spain where I was staying just before my operation and wondering whether I should go ahead with it after all. The chemotherapy (FEC) I had had over the previous eighteen weeks had taken out one lesion altogether and shrunk the other down to a size which made it feasible to operate. My poor right breast felt normal again. The puckering had gone, and so had the lump I could feel. As for the other rogue cells at large in my system, I knew removing my breast was not to going to have the least effect on them - their control was down to the chemo and the Herceptin alone. But still I went ahead, two days after sailing back from Spain. I went ahead because my doctors, Duncan and Alistair, had now decided it was 'worth it'. Surgery, though, was without doubt the worst part of the whole business for me, apart from the emotional shocks (disappointment in family members) which were nothing to do with the disease itself (although they may have had a lot to do with its progression). The surgery was bad because it was painful (at least in the aftermath) and ate into my daily routine (I couldn't drive my car for a couple of weeks) and - worst of all, it necessitated a week's stay in hospital, which meant, in theory, a total lack of privacy for me - a state of exposure I thought absolutely couldn't stand. In the event, though, I was only sharing with two other women in the bay after we had conspired to remove the old woman with dementia who kept us up all night with her complaining, and - worse - had a terrible, whingeing daughter who was visiting on the ward from 8 thirty in the morning till 8 pm at night and for some reason lit on me as the patient to badger. This ghoul (for that's what she was) haunted me throughout the day I was waiting to go down for surgery with her tales of people who had died (from breast cancer) and those who ended up with lymphodema. At last, I shook her off and hid in the chapel; but when the time came for me to change into the theatre gown, she stood over my bed and made a running commentary on the progress of my undressing to her demented mother (and father). Boy was I glad to see the back of her. I guess she's badgering someone else now. That's the trouble with whingeing hypochondriacs: they always live to tell another tale.
Still, maybe she chased me into the chapel for a reason. The Gospel was open on the story of the storm at sea in which Jesus (who is sleeping soundly as the sea is raging) admonishes his disciples with the question: 'Where is your faith?' I knew I would be all right after that. I just knew.
Friday, 28 March 2008
Friday, 21 March 2008
Herceptin at Home
Yesterday, my treatment came to me. I have always been wary of having it at home, thinking this must be the thin end of the wedge, the slippery slide to the hereafter that no one with cancer wants to get onto; but it didn't feel like that at all. In fact, my only regret now is not taking up Duncan's (my consultant's) offer to 'have it at home' in the first place.
The nurse, Sarah, was uniformly charming. The equipment came in a discreet black suitcase on wheels - thanks to the weight of the oxygen cylinder inside and the foldaway chrome drip stand. We set up straight away, me soaking my hands in my kitchen sink while Sarah moved the chair around. She found a vein within seconds and was in it even faster. I have never before had a 'flashback' (haemorrage) into the valve as fast and furious as that. Then we sat and chatted while the drug dripped in under its own pressure. The electronic pumps they use at the hospital are apparently only for monitoring. 'So they can go off and see to other people,' Sarah said. 'But you have me - my undivided attention, for the next two hours.'
It passed really quickly. I was warm, holding my hot water bottle, and completely stress-free in my own armchair with my feet up on the plastic cube. Sarah went out to look at my garden and said she was booking some time out there in the summer months, which made me visualise having my treatment under the trees, with the parasol protecting me from dripping sap.
Sara works for a private company that provides outreach nursing services to both the NHS and private sector - and I felt like a private patient in her care. The Herceptin bag came by overnight courier from Burton on Trent, and I was presented with my own smart blue file, containing the usual protocols, an emergency on-call contacts list, and a copy of Duncan's prescription. Sarah had a hand held gadget that printed out the treatment notes onto a label she stuck into the file. Cannulation attempts: 1, etc, etc. Tolerating it well.
If this is all I have to tolerate from now on, I can live with that.
I am living with that!
The nurse, Sarah, was uniformly charming. The equipment came in a discreet black suitcase on wheels - thanks to the weight of the oxygen cylinder inside and the foldaway chrome drip stand. We set up straight away, me soaking my hands in my kitchen sink while Sarah moved the chair around. She found a vein within seconds and was in it even faster. I have never before had a 'flashback' (haemorrage) into the valve as fast and furious as that. Then we sat and chatted while the drug dripped in under its own pressure. The electronic pumps they use at the hospital are apparently only for monitoring. 'So they can go off and see to other people,' Sarah said. 'But you have me - my undivided attention, for the next two hours.'
It passed really quickly. I was warm, holding my hot water bottle, and completely stress-free in my own armchair with my feet up on the plastic cube. Sarah went out to look at my garden and said she was booking some time out there in the summer months, which made me visualise having my treatment under the trees, with the parasol protecting me from dripping sap.
Sara works for a private company that provides outreach nursing services to both the NHS and private sector - and I felt like a private patient in her care. The Herceptin bag came by overnight courier from Burton on Trent, and I was presented with my own smart blue file, containing the usual protocols, an emergency on-call contacts list, and a copy of Duncan's prescription. Sarah had a hand held gadget that printed out the treatment notes onto a label she stuck into the file. Cannulation attempts: 1, etc, etc. Tolerating it well.
If this is all I have to tolerate from now on, I can live with that.
I am living with that!
Monday, 25 February 2008
City of Light
On the haem clinic wall is a picture of Paris. It's the Champs Elysees, I think, because the Arc de Triomphe is visible in the background, although it could be a view from that boulevard in the 16th arrondissement, the other side of the Etoile, where my Serb friend, Lydia, used to live. I don't know where she lives now because she stopped speaking to me when I refused to see the Yugoslav civil war in Serb-delineated black and white. I know she married a fellow Serb in Paris, a composer, no less, who came to visit us in Cornwall twice and even composed a piano piece for me. They have since divorced.
Back to the picture: the foreground has buildings on the boulevard done in garish colours, with a cafe-terrasse down below. The right hand of the composition is carefully drawn in, but the left is an impressionistic mess - it could be a rainy pavement, it could be the cafe lights twinkling in the twilight. It could just be that the artist got tired, as patients get tired in the haem clinic, of sitting there and wondering what to do next. But it did its job in distracting me from the blood bags and the needles. It took me back, albeit in a sort of cynical, superior way, to Paris, where I spent so much of my life, first as a student at the Sorbonne and then in a variety of useless jobs. Actually, I spent a lot of time in Paris even before that. I've been doing nothing in Paris since I was about fifteen. I often think about going to live back there, but then I visit again and the same old ennui washes over me: Been There. Done That.
Still...Paris. In the Spring. Paris. Nuits de juin, dix-sept ans, On se laisse griser... (That was Rimbaud, not me, the enfant-terrible of a poet my tutor at University said he would have hated to have in HIS class...) Henry Miller is another notorious liver-in-Paris. (Alistair would not have wanted HM in his class either...) I remember so much about the place - those parties held by American, Jim Haynes, in his atelier in Montparnasse, trying to perpetuate the Paris of long ago, of writers and artists and no-hopers but determined livers nonetheless.
I wonder what it means to the others who see that picture every day? It's more evocative than the other pictures they've got up there, most, I suspect, donated by grateful patients. There are static views of Cornwall ( it's possible to make even the sea here static if you've got no eye) and the odd abstract. But Paris did it for me, even though the Champs Elysees has to be my least favourite part of the city of light. It caught the aspect of the entire city, something of its spirit. And in a haematology clinic in Truro on a Monday in February, that's saying something. That is succeeding in something.
Back to the picture: the foreground has buildings on the boulevard done in garish colours, with a cafe-terrasse down below. The right hand of the composition is carefully drawn in, but the left is an impressionistic mess - it could be a rainy pavement, it could be the cafe lights twinkling in the twilight. It could just be that the artist got tired, as patients get tired in the haem clinic, of sitting there and wondering what to do next. But it did its job in distracting me from the blood bags and the needles. It took me back, albeit in a sort of cynical, superior way, to Paris, where I spent so much of my life, first as a student at the Sorbonne and then in a variety of useless jobs. Actually, I spent a lot of time in Paris even before that. I've been doing nothing in Paris since I was about fifteen. I often think about going to live back there, but then I visit again and the same old ennui washes over me: Been There. Done That.
Still...Paris. In the Spring. Paris. Nuits de juin, dix-sept ans, On se laisse griser... (That was Rimbaud, not me, the enfant-terrible of a poet my tutor at University said he would have hated to have in HIS class...) Henry Miller is another notorious liver-in-Paris. (Alistair would not have wanted HM in his class either...) I remember so much about the place - those parties held by American, Jim Haynes, in his atelier in Montparnasse, trying to perpetuate the Paris of long ago, of writers and artists and no-hopers but determined livers nonetheless.
I wonder what it means to the others who see that picture every day? It's more evocative than the other pictures they've got up there, most, I suspect, donated by grateful patients. There are static views of Cornwall ( it's possible to make even the sea here static if you've got no eye) and the odd abstract. But Paris did it for me, even though the Champs Elysees has to be my least favourite part of the city of light. It caught the aspect of the entire city, something of its spirit. And in a haematology clinic in Truro on a Monday in February, that's saying something. That is succeeding in something.
Monday, 18 February 2008
Healing Waters
Just back from the hot springs of Budapest where there is always something new to discover. I first went there six years ago, which was three years BC (before cancer) and stayed at The Gellert Hotel, which put me straight in mind of the sort of old Soviet hotel I used to stay at when working in Russia before the capitalist revolution in the early Nineties. Because The Gellert was really showing its age last time we went there in 2005 (although the bathroom is forever etched in my memory as the place where I spotted the second lump in my right breast), we stayed this time at the Helia, an anodyne modern edifice opposite Margitsziget (Margaret Island). But I recognised the concierge there from The Gellert, so Cara and I were given an upgrade to a room set aside on a restful corner of the first floor, with views over the Danube and the edge of the spa complex. This beat the tram noise at the poor old Gellert though the thermal water in the baths was just as hot (up to 38 C) but clearer, less gaseous than the greenish soup with elderly ladies floating in it you get at the public baths. I wrote about the famous Gellert baths in the archive pieces (Crab and Fishes) so won't repeat myself now.
I didn't take any medical insurance, other than my standard cover that comes free for Cara and me through my banking package (if anything from a bank can ever be said to be free), and our E111 forms, of course. When we arrived, though, the driver who picked us up from the airport (recommended - see www.budapesthotels.com Airport Pickup Service) said there had been a demonstration that day about proposals to make Hungary's health service a paid for service. If this happens, I expect it will put an end to free reciprocal agreements with the NHS in Britain. But I didn't take out extra cover when I went to Switzerland either, in 2006, or Germany in 2007 - although I didn't anticipate any problems in either of those places. The most likely problems, relating to my cancer treatment anyway, would have arisen when I sailed to Spain in 2005, five weeks into chemotherapy treatment (and without my hair), or later that year, in Budapest, exactly a month after my operation. Travel insurance for people with 'ongoing' or 'prexisting' conditions like cancer is punitive - although I recently read somewhere that these punitive measures contravene disability rights legislation under EU law.
Anyway, Budapest. It's wonderful. Try it. Sod the insurance - just go.
I didn't take any medical insurance, other than my standard cover that comes free for Cara and me through my banking package (if anything from a bank can ever be said to be free), and our E111 forms, of course. When we arrived, though, the driver who picked us up from the airport (recommended - see www.budapesthotels.com Airport Pickup Service) said there had been a demonstration that day about proposals to make Hungary's health service a paid for service. If this happens, I expect it will put an end to free reciprocal agreements with the NHS in Britain. But I didn't take out extra cover when I went to Switzerland either, in 2006, or Germany in 2007 - although I didn't anticipate any problems in either of those places. The most likely problems, relating to my cancer treatment anyway, would have arisen when I sailed to Spain in 2005, five weeks into chemotherapy treatment (and without my hair), or later that year, in Budapest, exactly a month after my operation. Travel insurance for people with 'ongoing' or 'prexisting' conditions like cancer is punitive - although I recently read somewhere that these punitive measures contravene disability rights legislation under EU law.
Anyway, Budapest. It's wonderful. Try it. Sod the insurance - just go.
Tuesday, 29 January 2008
Herceptin
Herceptin has been my bag for close on three years now. When opium was first synthesised, I believe they called the new drug heroin because, to the patients that used it to numb pain, it had a heroic quality; and in its purest form, uncut by flour or cement dust or milk formula or whatever else the crooks who deal it use, I expect it still has. Herceptin, anyway, is my heroine, at least for now.
I have my treatment, by intravenous infusion, every three weeks at the haematology clinic in the Royal Cornwall Hospital. The nursing team there are heroines of a different sort, battling with infinite patience against the unseen powers who make so many stupid, arbitrary and ever more impractical administrative decisions at this and so many other NHS hospitals in which the management culture is now a terrible blight. It's a culture predicated on a wish to curse, not cure. The latest decision thought up by this dictatorial crew of outrageously overpaid bureaucrats (whether or not they've got MBAs - and in a cancer clinic, who gives a shit about MBAs?) is to overbook the clinics and take on ever increasing numbers of chemotherapy and blood transfusion patients, without increasing the number of nursing staff or seats in the treatment rooms. By what rationale of time and motion or other redundant studies they see this working, God only knows; but for the cancer patients waiting for chairs, it means a longer wait; and for the oncology nurses, who start at 8am and work till six (or when the last late patient has finished...), it means no lunch or tea breaks. To perform their jobs as well as they do, in such circumstances, with such unfailing patience and friendliness and professionalism, it goes without saying that this team of nurses - Jo, Alice, Rachel, Yvonne, Cass and all their colleagues are something beyond exceptional.
Yesterday (thanks to Management), I waited forty minutes for my chair in the treatment room (and I was lucky - I got a recliner) and was cannulated at twenty to two by poor Alice, who hadn't had a break since clocking on. This time last year, I was having problems with my veins, it taking sometimes as many as 11 cannulation attempts (which means 11 pricks in the arm and hand) to get a line in; but, strangely enough, it's got better since last summer and now I don't worry about it nearly as much as I used to. It's not that the cannulation is particularly painful: a 'sharp scratch' is indeed all it is; it's the anticipation (will they spear a vein this time? will it be over soon?) that causes the most stress. I must now have had close to two hundred 'sharp scratches' - including all the spikes for blood tests, etc, and all in my long-suffering left arm and hand, the right one (my 'operated side') being out of bounds because of risk of lymphodema. I haven't got lymphodema though, and sometimes, it has to be said, they go into the veins on the right. They use the smallest gauge of needle (a paediatric cannula), which is fine for chemo drugs, including Herceptin, but not for CT scans, which require the contrast injection to be given at a faster infusion. But I have found a way around this, like today, by getting the radiographers to put the contrast in through my treatment (paediatric) cannula at a lower pressure. This meant I got away with only two sharp scratches this week - Alice's one failed attempt in my hand and her other successful 'scratch' infusing both Herceptin yesterday and revolting, metal-tasting contrast dye this morning, when they scanned my chest and abdomen.
That's treatment over now for the next four weeks because I am taking a holiday in Budapest on 10 Feb. It's allowed to take the occasional holiday from Herceptin treatment, but what this means in terms of future appointments is that my schedule will be out of synch - and this means more 'sharp scratches'. Usually, I manage to synch a three weekly Herceptin infusion with a three monthly clinic appointment, which means I can get away with one cannulation for both infusion and the dreaded blood test, it being more difficult to get blood out of me than Herceptin into me. But Budapest is more than worth that extra sharp scratch; and four weeks - a whole four weeks - away from the hospital, after all this time, feels like a liberation!
I have my treatment, by intravenous infusion, every three weeks at the haematology clinic in the Royal Cornwall Hospital. The nursing team there are heroines of a different sort, battling with infinite patience against the unseen powers who make so many stupid, arbitrary and ever more impractical administrative decisions at this and so many other NHS hospitals in which the management culture is now a terrible blight. It's a culture predicated on a wish to curse, not cure. The latest decision thought up by this dictatorial crew of outrageously overpaid bureaucrats (whether or not they've got MBAs - and in a cancer clinic, who gives a shit about MBAs?) is to overbook the clinics and take on ever increasing numbers of chemotherapy and blood transfusion patients, without increasing the number of nursing staff or seats in the treatment rooms. By what rationale of time and motion or other redundant studies they see this working, God only knows; but for the cancer patients waiting for chairs, it means a longer wait; and for the oncology nurses, who start at 8am and work till six (or when the last late patient has finished...), it means no lunch or tea breaks. To perform their jobs as well as they do, in such circumstances, with such unfailing patience and friendliness and professionalism, it goes without saying that this team of nurses - Jo, Alice, Rachel, Yvonne, Cass and all their colleagues are something beyond exceptional.
Yesterday (thanks to Management), I waited forty minutes for my chair in the treatment room (and I was lucky - I got a recliner) and was cannulated at twenty to two by poor Alice, who hadn't had a break since clocking on. This time last year, I was having problems with my veins, it taking sometimes as many as 11 cannulation attempts (which means 11 pricks in the arm and hand) to get a line in; but, strangely enough, it's got better since last summer and now I don't worry about it nearly as much as I used to. It's not that the cannulation is particularly painful: a 'sharp scratch' is indeed all it is; it's the anticipation (will they spear a vein this time? will it be over soon?) that causes the most stress. I must now have had close to two hundred 'sharp scratches' - including all the spikes for blood tests, etc, and all in my long-suffering left arm and hand, the right one (my 'operated side') being out of bounds because of risk of lymphodema. I haven't got lymphodema though, and sometimes, it has to be said, they go into the veins on the right. They use the smallest gauge of needle (a paediatric cannula), which is fine for chemo drugs, including Herceptin, but not for CT scans, which require the contrast injection to be given at a faster infusion. But I have found a way around this, like today, by getting the radiographers to put the contrast in through my treatment (paediatric) cannula at a lower pressure. This meant I got away with only two sharp scratches this week - Alice's one failed attempt in my hand and her other successful 'scratch' infusing both Herceptin yesterday and revolting, metal-tasting contrast dye this morning, when they scanned my chest and abdomen.
That's treatment over now for the next four weeks because I am taking a holiday in Budapest on 10 Feb. It's allowed to take the occasional holiday from Herceptin treatment, but what this means in terms of future appointments is that my schedule will be out of synch - and this means more 'sharp scratches'. Usually, I manage to synch a three weekly Herceptin infusion with a three monthly clinic appointment, which means I can get away with one cannulation for both infusion and the dreaded blood test, it being more difficult to get blood out of me than Herceptin into me. But Budapest is more than worth that extra sharp scratch; and four weeks - a whole four weeks - away from the hospital, after all this time, feels like a liberation!
Friday, 25 January 2008
The Illusion of Pain
If the first and lowest operation of pain shatters the illusion that all is well, the second shatters the illusion that what we have, whether good or bad in itself, is our own and enough for us.
C.S Lewis, The Problem of Pain
For the three years I've been living with this condition I have experienced mostly human kindness and compassion, and this has been at its very best. At its very worst, I've had people avoiding me - and I can live without those people. But last Saturday, when I explained to the woman who recently moved to the house at the bottom of my garden and was berating me about the sight of my builders' heap - only exposed by her illegal felling of some ancient trees - that I was (a) not aware that the builder had left an old loo seat there, in view of her window; and (b) that I was not up to clearing the large items slipping out from under the pile of leaves because I was living with secondary cancer and tired easily, her response was:
I DON'T WANT TO KNOW THAT....
There then followed several abusive fishwife style charges, too silly and petty to mention here, although they left me reeling in amazement. My tendency (a bad one, since it always puts me on the wrong foot) is to feel sorry for such people because they are well, let's say, uneducated LOCAL people (Cornish peasants...) who probably haven't had a quarter of my advantages, etc, etc. But that's politically incorrect of me. Probably illegal even to THINK such things these days...(I hold my hand up, guvnor...) Probably some mental illness there - even if its only a pathological lack of compassion; but isn't that a definition of a psychopath? Oh God - and at the bottom of the garden, too!
Thing is, though, if you live with cancer, you can pretty much live with anything.
C.S Lewis, The Problem of Pain
For the three years I've been living with this condition I have experienced mostly human kindness and compassion, and this has been at its very best. At its very worst, I've had people avoiding me - and I can live without those people. But last Saturday, when I explained to the woman who recently moved to the house at the bottom of my garden and was berating me about the sight of my builders' heap - only exposed by her illegal felling of some ancient trees - that I was (a) not aware that the builder had left an old loo seat there, in view of her window; and (b) that I was not up to clearing the large items slipping out from under the pile of leaves because I was living with secondary cancer and tired easily, her response was:
I DON'T WANT TO KNOW THAT....
There then followed several abusive fishwife style charges, too silly and petty to mention here, although they left me reeling in amazement. My tendency (a bad one, since it always puts me on the wrong foot) is to feel sorry for such people because they are well, let's say, uneducated LOCAL people (Cornish peasants...) who probably haven't had a quarter of my advantages, etc, etc. But that's politically incorrect of me. Probably illegal even to THINK such things these days...(I hold my hand up, guvnor...) Probably some mental illness there - even if its only a pathological lack of compassion; but isn't that a definition of a psychopath? Oh God - and at the bottom of the garden, too!
Thing is, though, if you live with cancer, you can pretty much live with anything.
Friday, 4 January 2008
Chronicle
I have just posted three extracts from a treatment chronicle I began about a year ago in order to try and make sense of (or impose some kind of order on through the medium of words) my diagnosis and life-changing new status as Person Living With Secondary Breast Cancer. I have survived this treatment, and this disease, for more than three years since my 'official' diagnosis in March 05, because I let the lump fester a good three months before finally plucking up the courage to visit my GP after a 'fortifying' sojurn in a Budapest spa (see Crab and Fishes 1....). All I can say on this point is, Go, go, go to the doctor - whatever your fears, whatever your circumstances, because it was really my circumstances, rather than fear, that prevented me taking that first step onto what I already recognised as my road to Compiegne. Except, unlike poor queen Marie-Antoinette, I kept my head and lived to tell the tale. In fact, once war has been declared on it, cancer is a strangely fearless condition, really. The fear, in my case, was all for my daughter. She was just ten then, and I could not bear the spectre of social services coming in to take her away from me if I needed to go into hospital. But I needn't have feared that. It was all sorted out in the end.
So, in case anyone is interested, or might like to take some heart from my experience, the retrospective postings of this journey on this blog are:
Crab and Fishes 1
The Regimen
Hair and Other Losses
So, in case anyone is interested, or might like to take some heart from my experience, the retrospective postings of this journey on this blog are:
Crab and Fishes 1
The Regimen
Hair and Other Losses
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