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| Photo: Richard Faisey |
Wednesday, 30 May 2012
OUT OF HOURS CARE UNDER THE COALITION
Three years ago, when I was close to dying from meningitis, an infection I caught post craniotomy, the kind friend who was staying with me got on the phone to Serco, the agency responsible for out of hours calls to GPs, because most GP Practices, at least those in Cornwall, don't make house calls; they leave emergency appeals from patients and carers to NHS Direct, Accident and Emergency Units, and to agencies like Serco.
The prompt action of my friend and the locum who attended me that night saved my life. I wonder if it would be the same scenario today, since Serco now appears to be drowning in a sea of suits and excuses following reports that there are longer and longer queues for out of hours calls and not enough locums to make house visits. I have long had misgivings about the competency, care, and accountability of GPs, so this news about Serco is particularly unnerving. I think my only recourse in an emergency is to do as my neurosurgeon told me and 'cut out the middle man'. In other words, head straight for the hospital. Visions of angry and suffering patients spring to mind, hammering on the doors of A and E. It's a disgrace that the United Kingdom, pioneer in treatment for all at the point of need, should have come to this. Dark times indeed.
Sunday, 29 April 2012
PIP REPLACEMENT
In a recent post on this blog, I wrote about faulty breast implants (PIPs) and the cost to the taxpayer of removing and/or replacing them on the NHS. This post is about a different type of PIP - the government's Personal Independence Payment which is to replace Disability Living Allowance (DLA) in 2013. To be eligible for PIP, you must be aged between 16 and 64, satisfy a daily living and/or mobility activities test for three months prior to claiming and be likely to continue to satisfy this test for a period of at least nine months after claiming (you can tell this is government-speak); pass a residence and presence test; and pass a habitual residence test, whatever that may be.
This new PIP is obviously designed to root out all the malingerers who have been claiming DLA on false pretences, using fake or faint disabilities to reap the award and cheat the Big Society taxpayer. That there are such malingerers about, I don't doubt for a second; but where does this change from DLA to PIP leave the bona fide claimant? I suppose the government would argue that if these others are genuinely bona fide, they should have nothing to fear from a new set of eligibility tests. But I smell a rat. As it stands, DLA is one of the toughest benefits to claim: the application form is enough to test the sharpest minds, let alone those weakened by illness or disability. Metastatic cancer has been given disability status, but when I tried to claim DLA in 2005 after I was diagnosed with secondary breast cancer, I was fobbed off, first by a Macmillan nurse and then, when I persisted, by the Department of Work and Pensions (DWP). It was only when I was in a catatonic state after my treatment for a brain metastasis four years later that I was approved for DLA, and that was due to the kind lady from the Citizens' Advice Bureau who helped me with the form by going through the questions with me and acting as my scribe. Had I had to fill the form in on my own, I wouldn't have had the energy, although I had had to stop work and desperately needed the money. I gave up the first time because I had some private health insurance to fall back on (although that shouldn't have affected DLA), but by the time I'd reached the brain tumour stage, I needed the benefit safety net.
I don't mind undergoing a PIP test in 2013, but I am wondering how they are going to gauge the level of my disability on a day-to-day basis. That I have a long-term disability I am in no doubt, and I am on Herceptin and Tamoxifen indefinitely to defend me from what my consultant calls further trouble; but I have good days and bad days. Since my treatments in 2009 (two craniotomies, the second one to stop the march of meningitis, cartloads of steroids and antibiotics; and the largest dose of radiotherapy I could have received without it killing me), I have made a slow but uncertain recovery from the effects of all these interventions. This means I have disabled days, when I am laid out by fatigue or veering side to side when I walk more than forty yards, and better days, when I am able to do simple household chores, so long as I don't reach up - reaching up and turning round too quickly make me dizzy and I lose my balance. I know that I will be living with these side effects for a very long time, not to mention the threat of further trouble, which is why I can't commit myself to regular work outside the online work I do at home, and this is why I rely on my DLA. I know I won't be the only one in this position.
This new PIP is obviously designed to root out all the malingerers who have been claiming DLA on false pretences, using fake or faint disabilities to reap the award and cheat the Big Society taxpayer. That there are such malingerers about, I don't doubt for a second; but where does this change from DLA to PIP leave the bona fide claimant? I suppose the government would argue that if these others are genuinely bona fide, they should have nothing to fear from a new set of eligibility tests. But I smell a rat. As it stands, DLA is one of the toughest benefits to claim: the application form is enough to test the sharpest minds, let alone those weakened by illness or disability. Metastatic cancer has been given disability status, but when I tried to claim DLA in 2005 after I was diagnosed with secondary breast cancer, I was fobbed off, first by a Macmillan nurse and then, when I persisted, by the Department of Work and Pensions (DWP). It was only when I was in a catatonic state after my treatment for a brain metastasis four years later that I was approved for DLA, and that was due to the kind lady from the Citizens' Advice Bureau who helped me with the form by going through the questions with me and acting as my scribe. Had I had to fill the form in on my own, I wouldn't have had the energy, although I had had to stop work and desperately needed the money. I gave up the first time because I had some private health insurance to fall back on (although that shouldn't have affected DLA), but by the time I'd reached the brain tumour stage, I needed the benefit safety net.
I don't mind undergoing a PIP test in 2013, but I am wondering how they are going to gauge the level of my disability on a day-to-day basis. That I have a long-term disability I am in no doubt, and I am on Herceptin and Tamoxifen indefinitely to defend me from what my consultant calls further trouble; but I have good days and bad days. Since my treatments in 2009 (two craniotomies, the second one to stop the march of meningitis, cartloads of steroids and antibiotics; and the largest dose of radiotherapy I could have received without it killing me), I have made a slow but uncertain recovery from the effects of all these interventions. This means I have disabled days, when I am laid out by fatigue or veering side to side when I walk more than forty yards, and better days, when I am able to do simple household chores, so long as I don't reach up - reaching up and turning round too quickly make me dizzy and I lose my balance. I know that I will be living with these side effects for a very long time, not to mention the threat of further trouble, which is why I can't commit myself to regular work outside the online work I do at home, and this is why I rely on my DLA. I know I won't be the only one in this position.
Monday, 12 March 2012
BUDAPEST DAYS
Budapest is a state of mind for me. I love it there. My daughter and I have recently returned from our latest trip, having been to the city practically every year since 2002. We always go in February or early March, partly because it is low season, but mostly because the cold and the thermal spa make a heady sensual contrast. This year's trip to the spa seemed especially beneficial to me. Because I no longer have the stamina to swim in the large Gellert pool, I went straight to the women's baths and spent the whole time wallowing in the 38C and 36C pools. The hot water, which comes from one of the many thermal springs under the city, is so dense with minerals, it is possible to float in it and fall asleep. After dozing off a couple of times, I did the only Qigong exercise I have managed to learn, together with a couple of made-up stretching movements to work my stiff legs. I could stand on one leg in the thermal water without falling over. I can't do that at home any more. A month after my mastectomy in October 2005, I was back in that water with a very dear man. During the previous months, I thought I wouldn't travel anywhere again. I thought I wouldn't live to see fifty. I thought I wouldn't live to see my forty seventh birthday.
This February's trip was our tenth anniversary at the hotel, and, without requesting it, we were given the same shabby middle-sized room with a turret at one end that we had on the first visit. I had my forty- third birthday during that first stay and the management sent up a bottle of Hungarian champagne. Since the intervening years brought us more spacious rooms with views of the Danube (thanks to a tame concierge whom we got to know), we were disappointed to get the very shabby one again last month. There are hundreds of rooms in the old grand hotel hotel, all old fashioned, with different gradations of shabbiness. We were about to ask for a better one when I realised that the turret room had been part of my life Before I Had Cancer. It then took on an almost mystical significance, thanks to the uncanny influence of deja-vu. I felt that I had come through some tremendous event, which I suppose I had after the two craniotomies, the meningitis, and all the other treatments. I had circumnavigated it. I had come full circle.
I wrote about the thermal spa in my first posts on this blog in 2008. Perhaps I should write more about it, but the soporific effect of the water empties my head, as it emptied when I went offshore in a fishing boat in the early 'Nineties, or on the lake steamer last year at Como. This empty-headed-ness, this ability to switch off when I am in or on water has taught me to cope with the stresses of living with cancer for the last seven years. I don't know anything about water-based healing, but all I have to do is imagine that state of soporific weightlessness and I can float - metaphorically speaking, and transcend it all.. I think of it every third Thursday when the nurse comes to cannulate me for my Herceptin infusion. I put my hands in hot water and think about the Budapest spa.
I wrote about the thermal spa in my first posts on this blog in 2008. Perhaps I should write more about it, but the soporific effect of the water empties my head, as it emptied when I went offshore in a fishing boat in the early 'Nineties, or on the lake steamer last year at Como. This empty-headed-ness, this ability to switch off when I am in or on water has taught me to cope with the stresses of living with cancer for the last seven years. I don't know anything about water-based healing, but all I have to do is imagine that state of soporific weightlessness and I can float - metaphorically speaking, and transcend it all.. I think of it every third Thursday when the nurse comes to cannulate me for my Herceptin infusion. I put my hands in hot water and think about the Budapest spa.
Thursday, 2 February 2012
PIPS AND SQUADDIES
My take on the Pips story (faulty French breast implants used by cheapskate cosmetic surgeons) is about the same as my take on the stream of young men Serving Their Country in Afghanistan: pointless, wasteful, and vainglorious.
As someone who had breast surgery as a first line defence against cancer, I just can't understand why anyone would choose to have their mammary appendages messed about with in the name of body enhancement - for pleasure, be it their own or to please other people. The body isn't a piece of fashion: it is a natural gift, and we mess about with it at our peril. Why have breasts always been problematic for women: not big enough, not small enough (see 1920's), not round enough? They are only problematic when they're not functioning properly, as in failing to feed babies, or so heavy that they cause breathing problems, or when they threaten survival, as with cancer. Any other 'problems' are just vanities; and it is vanity alone, not psychological disorders ('bad body image/low self-esteem') that prompts women to visit private clinics to have their boobs inflated. They pay to have the implants in, and it is only fair that that they should pay to have the implants out. The suggestion that the NHS take them out at the taxpayers' expense is scandalous and morally abhorrent, especially in a time of austerity and cuts to the Service. For every Pip that gets taken out in an NHS hospital, another bona fide patient, awaiting breast reconstruction after mastectomy, say, is kept waiting.
As for the young Squaddies, they choose to join the military; they aren't conscripts who have no say in the matter. It seems like skewed thinking to me to propose building hostels where the relatives of injured career fighters can stay while their soldier is having his false limb fitted. Instead of hostels for the rellies, we need hospices for the chronically ill and bereft, who have no choice with regard to their condition in life.
I had a go at the false boobs culture in an early post on this blog when the revolting Jordan (aka Katie Price) was at the top of her game. I can't remember which post it is, but there was something gruesome in it about false fillets exploding in crematoriums (sorry). We are all headed in the same direction, towards the inevitable ending, and if we can't get that, and inwardly digest it, our lives are not worth living.
image by Agnes Toth
http://www.agnestoth.eu
As someone who had breast surgery as a first line defence against cancer, I just can't understand why anyone would choose to have their mammary appendages messed about with in the name of body enhancement - for pleasure, be it their own or to please other people. The body isn't a piece of fashion: it is a natural gift, and we mess about with it at our peril. Why have breasts always been problematic for women: not big enough, not small enough (see 1920's), not round enough? They are only problematic when they're not functioning properly, as in failing to feed babies, or so heavy that they cause breathing problems, or when they threaten survival, as with cancer. Any other 'problems' are just vanities; and it is vanity alone, not psychological disorders ('bad body image/low self-esteem') that prompts women to visit private clinics to have their boobs inflated. They pay to have the implants in, and it is only fair that that they should pay to have the implants out. The suggestion that the NHS take them out at the taxpayers' expense is scandalous and morally abhorrent, especially in a time of austerity and cuts to the Service. For every Pip that gets taken out in an NHS hospital, another bona fide patient, awaiting breast reconstruction after mastectomy, say, is kept waiting.
As for the young Squaddies, they choose to join the military; they aren't conscripts who have no say in the matter. It seems like skewed thinking to me to propose building hostels where the relatives of injured career fighters can stay while their soldier is having his false limb fitted. Instead of hostels for the rellies, we need hospices for the chronically ill and bereft, who have no choice with regard to their condition in life.
I had a go at the false boobs culture in an early post on this blog when the revolting Jordan (aka Katie Price) was at the top of her game. I can't remember which post it is, but there was something gruesome in it about false fillets exploding in crematoriums (sorry). We are all headed in the same direction, towards the inevitable ending, and if we can't get that, and inwardly digest it, our lives are not worth living.
http://www.agnestoth.eu
Saturday, 14 January 2012
ITHAKA
This morning, I came across this poem in one of my old notebooks. It struck a strong, deep note of recognition in me, as though I had stored it away for the cancer journey, before I even had cancer. I'm going to send it to my daughter:
Ithaka
As you set out for Ithaka
hope your road is a long one,
full of adventure, full of discovery,
Laistrygonians, Cyclops,
angry Poseidon, don't be afraid of them:
you'll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Laistrygonians, Cyclops,
wild Poseidon - you won't encounter them
unless you bring them along inside your soul,
unless your soul sets them up in front of you.
C.P Cavafy
Ithaka
As you set out for Ithaka
hope your road is a long one,
full of adventure, full of discovery,
Laistrygonians, Cyclops,
angry Poseidon, don't be afraid of them:
you'll never find things like that on your way
as long as you keep your thoughts raised high,
as long as a rare excitement
stirs your spirit and your body.
Laistrygonians, Cyclops,
wild Poseidon - you won't encounter them
unless you bring them along inside your soul,
unless your soul sets them up in front of you.
C.P Cavafy
Wednesday, 11 January 2012
FIGHT BACK WITH FITNESS
Guest Blogger, David Haas, at Mesothelioma Cancer Alliance, has kindly sent me this article about fitness and cancer. Check out David's profile at http://about.me/haasblaag
- he's inspirational.
"Fight back with fitness - Ways to Boost or Maintain Your Exercise Routine”
The MD Anderson Cancer Center at the University of Texas has the slogan Making Cancer History. They, along with many other cancer researchers, mesothelioma doctors, and physicians believe strongly that exercise can become a powerful tool in your effort to fight cancer. Whether you've been diagnosed with breast cancer, mesothelioma or any other form of the disease, your diagnosis doesn't have to become the end of your fitness routine. If you were active before and enjoyed the benefits of being physically fit, then you already understand how important exercise is to the body and the mind. Here are some tips to keep your exercise routine going, while incorporating a little fun into your life.
* Take a Class
The local YMCA, fitness or community centre is likely to offer a variety of exercise classes you can participate in. While participating in class you need only exert as much effort as you're able to that day but will still reap the benefits of moving your body, getting out of the house and being around other people.
* Dance
Whether you dance at home or take a class at a local dance studio, the combination of music and movement is good for your body and soul. Choose a style of dance that revolves around upbeat music, such as disco, salsa, or jazz dancing. Dancing is a great total body workout and the music helps lift the mood.
* Spinning
Spinning on an exercise bike at home or at the health club is excellent aerobic exercise. If moving your legs gets difficult after a while, alternate between the stationery bike at your health club and the arm bike.
*Favourite Exercise DVDs
Remember the old exercise video tapes of the 80s and 90s? Many of them are available on DVD and can be fun to work out to at home.
As exercise increases your fitness, it can help you reduce or avoid experiencing side effects from chemotherapy and other cancer treatments. The support and camaraderie experienced while taking an exercise class is also beneficial beyond measure, providing you with a physical outlet and surrounding you by friends and other people with whom you can talk. Thirty minutes of exercise daily can provide you with an improved emotional state, while maintaining flexibility, mobility and your aerobic health. Mesothelioma doctors and other physicians recommend incorporating exercise into your daily schedule as part of your artillery to fight back against cancer
David Haas
Citation:
http://www2.mdanderson.org/cancerwise/2011/02/fight-cancer-with-fitnesstips-to-amp-up-your-exercise-routine.html
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Anne Morgellyn comments: I can vouch for the value of exercise on the way to recovery - although it was a good eighteen months post treatment before I was able to undertake anything more strenuous than a walk to the bathroom! But just before Christmas, I signed up to Marcus Santer's online Qigong course, highly recommended to me by my singing teacher. I have to confess that I have so far mastered only one exercise - but spending only fifteen minutes a day on this gentle medicinal workout has significantly improved my balance and general energy levels.
Marcus Santer can be found on Google or at
http://qigong15.com/blog/qigong-training/about
- he's inspirational.
"Fight back with fitness - Ways to Boost or Maintain Your Exercise Routine”
The MD Anderson Cancer Center at the University of Texas has the slogan Making Cancer History. They, along with many other cancer researchers, mesothelioma doctors, and physicians believe strongly that exercise can become a powerful tool in your effort to fight cancer. Whether you've been diagnosed with breast cancer, mesothelioma or any other form of the disease, your diagnosis doesn't have to become the end of your fitness routine. If you were active before and enjoyed the benefits of being physically fit, then you already understand how important exercise is to the body and the mind. Here are some tips to keep your exercise routine going, while incorporating a little fun into your life.
* Take a Class
The local YMCA, fitness or community centre is likely to offer a variety of exercise classes you can participate in. While participating in class you need only exert as much effort as you're able to that day but will still reap the benefits of moving your body, getting out of the house and being around other people.
* Dance
Whether you dance at home or take a class at a local dance studio, the combination of music and movement is good for your body and soul. Choose a style of dance that revolves around upbeat music, such as disco, salsa, or jazz dancing. Dancing is a great total body workout and the music helps lift the mood.
* Spinning
Spinning on an exercise bike at home or at the health club is excellent aerobic exercise. If moving your legs gets difficult after a while, alternate between the stationery bike at your health club and the arm bike.
*Favourite Exercise DVDs
Remember the old exercise video tapes of the 80s and 90s? Many of them are available on DVD and can be fun to work out to at home.
As exercise increases your fitness, it can help you reduce or avoid experiencing side effects from chemotherapy and other cancer treatments. The support and camaraderie experienced while taking an exercise class is also beneficial beyond measure, providing you with a physical outlet and surrounding you by friends and other people with whom you can talk. Thirty minutes of exercise daily can provide you with an improved emotional state, while maintaining flexibility, mobility and your aerobic health. Mesothelioma doctors and other physicians recommend incorporating exercise into your daily schedule as part of your artillery to fight back against cancer
David Haas
Citation:
http://www2.mdanderson.org/cancerwise/2011/02/fight-cancer-with-fitnesstips-to-amp-up-your-exercise-routine.html
---------------------------------------------------
---------------------------------------------------
---------------------------------------------------
Anne Morgellyn comments: I can vouch for the value of exercise on the way to recovery - although it was a good eighteen months post treatment before I was able to undertake anything more strenuous than a walk to the bathroom! But just before Christmas, I signed up to Marcus Santer's online Qigong course, highly recommended to me by my singing teacher. I have to confess that I have so far mastered only one exercise - but spending only fifteen minutes a day on this gentle medicinal workout has significantly improved my balance and general energy levels.
Marcus Santer can be found on Google or at
http://qigong15.com/blog/qigong-training/about
Tuesday, 10 January 2012
HAIR CLIPPINGS
The acupuncture I had post-surgery did a lot for my nausea, balance, and energy levels; but the little copper needles in my scalp, in spite of the therapist's best efforts, have so far failed to stimulate my hair. I am now resigned to male-pattern baldness as a lasting legacy of the tremendous bolt of radiation I was given to mop up any rogue cells remaining after the second craniotomy. It has been well over two years now, and, although the back and sides have been growing slowly but surely, my tonsure still refuses to sprout.
Tired of trimming the new growth with nail scissors to match the non-growth on the top, three days ago I ordered some electric hair-clippers from Amazon, which arrived this morning. At first, I was too terrified to take them out of the box, but once I'd found the right gauge for beginners (a series of colour-coded safety combs), I oiled the blades and gave it a whirl. An hour later, I had a perfect Sinead O'Connor cut and a fresher-feeling in my scalp, enhanced by Neem Hair lotion from Dr Hauschka. Now I know how boys feel when they get a new gadget: excited, thrilled, can't wait to use it again.
Since I've been in recovery, I have ordered a lot of stuff from Amazon, all of it good and speedily dispatched. I've had bathroom shelves, a phone, a digital radio, vacuum cleaner, a pad to stop my laptop sliding off my knees, tiny trolley cases guaranteed to satisfy the stringent cabin baggage allowances of EasyJet and Ryanair, a watch, an opal ring for my daughter's Christmas present, and numerous books and CDs. I have the entire collection of Thomas Mann, whose novel 'The Magic Mountain' (Der Zauberberg), has to be the best book about chronic illness ever written, taking in philosophy, the tensions in Europe before the Great War, and perceptions of time, expanding and contracting as the seven years of Casthorp's sojurn in the sanatorium go by. Jeanette Winterson was on the radio this morning talking about the solace which reading can bring to a troubled soul. How that resonated with me as I was reading 'The Magic Mountain' again in the early days of my recovery. Now I'm reading Dostoyevsky's 'Brothers Karamazov' again, for the umpteenth time, and it too seems to have a greater significance for me in my cancer years. The other great soul feed, perhaps the greatest, is music. As I write this, I am listening to Verdi's Requiem, for which I begin rehearsals this evening with Truro Choral Society.
In the meantime, the Amazon courier has just delivered another package, and I have a book case to build.
Tired of trimming the new growth with nail scissors to match the non-growth on the top, three days ago I ordered some electric hair-clippers from Amazon, which arrived this morning. At first, I was too terrified to take them out of the box, but once I'd found the right gauge for beginners (a series of colour-coded safety combs), I oiled the blades and gave it a whirl. An hour later, I had a perfect Sinead O'Connor cut and a fresher-feeling in my scalp, enhanced by Neem Hair lotion from Dr Hauschka. Now I know how boys feel when they get a new gadget: excited, thrilled, can't wait to use it again.
Since I've been in recovery, I have ordered a lot of stuff from Amazon, all of it good and speedily dispatched. I've had bathroom shelves, a phone, a digital radio, vacuum cleaner, a pad to stop my laptop sliding off my knees, tiny trolley cases guaranteed to satisfy the stringent cabin baggage allowances of EasyJet and Ryanair, a watch, an opal ring for my daughter's Christmas present, and numerous books and CDs. I have the entire collection of Thomas Mann, whose novel 'The Magic Mountain' (Der Zauberberg), has to be the best book about chronic illness ever written, taking in philosophy, the tensions in Europe before the Great War, and perceptions of time, expanding and contracting as the seven years of Casthorp's sojurn in the sanatorium go by. Jeanette Winterson was on the radio this morning talking about the solace which reading can bring to a troubled soul. How that resonated with me as I was reading 'The Magic Mountain' again in the early days of my recovery. Now I'm reading Dostoyevsky's 'Brothers Karamazov' again, for the umpteenth time, and it too seems to have a greater significance for me in my cancer years. The other great soul feed, perhaps the greatest, is music. As I write this, I am listening to Verdi's Requiem, for which I begin rehearsals this evening with Truro Choral Society.
In the meantime, the Amazon courier has just delivered another package, and I have a book case to build.
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