NHS, Personal health

Eating myself

This has been a week of scans, doctor’s visits and clarity at last. The detail will come later. First the headline announcement. Bruce Wylie is eating himself … or rather Bruce Wylie’s cancer is eating him. But since the cancer is me, that’s a moot point. The cancer grows at the expense of my normal functions, diverting resources. This is of course, the reason for my progressive weight loss and once fat is used up, the muscles are next.

Thank God for good GPs. Mine is helpful, considerate and knows when I need to have time with her just to regain perspective. I am pretty clear now about the near future in a way I wasn’t a week ago. I can counteract some things with drugs or other treatments eg sickness and anaemia. And I will do so. Weight and strength loss are here to stay and will get gradually worse. I can only counteract that by eating as much as I can :-) and getting in extra help around home and garden to take that demand of Gina and me. I must do so. I will continue with chemo, hoping it has kicked in now after 3 months and will continue to bear down on new and existing metastases. I will be on it for at least the rest of this year provided nothing untoward happens. I want what that can give me, 9 extra months of life.

The scan result was nevertheless a shock. The reports always compare with the last scan, looking for changes. This one covered both 3 months not on chemo and 3 months on chemo. It showed extensive progress of my cancer. That is, more metastases in old sites, as well as new sites including the liver. It also showed growth of pre-existing metastases. Hopefully most of this will have happened before the chemo kicked in, in the last 3 months. The next scan, in another 3 months, will show whether the advance has been stopped.

I am optimistic about that and will pursue the chemo for as long as I can. And I am realistic about the medium term. My prognosis before my first operation in late January 2014 was 3 years survival. This is after all, secondary cancer 17 years following the primary. I am 18 months into that 3 years and allowing for the respite chemo can give, the overall survival seems about right, excluding unexpected major events. So I am around for a while longer, with no plans to check out soon.

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Personal health

Struggle

Life’s a struggle. In fact writing is a struggle. My weakness continues, coupled with vomiting attacks which are usually once daily but sometimes more frequent. Gina and are getting by with the help of friends, internet shopping and lots of rest. She continues to volunteer in school and in her governor’s role. But I .. well I’ve no energy for anything more than keeping on keeping on. Outings are essentially confined to hospital or GP visits.

Is it the effect of the chemo? Three months in now. Well at least partly, certainly the sickness. But the full story behind the weakness is more complex and no one doctor has a full picture; multi-factorial one said, without listing the factors. Factor one: I am chronically anaemic, a consequence of damaged kidney function ( one’s kidneys play a role in red-blood cell formation). Queue regular infusions of EPO (blood cell formation) and Ferratin (long-term iron stores) over the last year and a recent blood transfusion. These have had good effects in terms of numbers but no discernible effect in terms of a permanent boost.

Factor 2: I have lost weight steadily since leaving hospital last March and I am now under 11 stone, under my right weight. Sure I had flab to get rid off and was even dieting a little but no more. The flab has largely gone but the most worrying aspect is muscle wastage which clearly must contribute to my weakness.

Factor 3?: I have no adrenal system left and take hydrocortisone replacement. Effects?

Where now? I have a meeting tomorrow with my oncologist to review two recent scans to assess whether the chemo is holding back progression of my cancer. More news later but the expectation is that it will be doing so. So the direction ahead is more chemo until it ceases to be effective and is withdrawn, usually at about 9 months.

But I feel I need a wider review than just oncology. I don’t believe that how I am feeling is just about chemo side effects. I feel sure that something systemic is at the heart of it. Maybe something more could be done to help me feel stronger? Maybe there’s an explanation but no further treatment than can help. I think I may be looking for answers that aren’t there but I’ll keep asking just in case. There is a comfort in an explanation even if there is still nothing that can be done :-)

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NHS, Personal health

Chemotherapy

It’s a powerful word “chemotherapy” and a powerful treatment. But I need to explain that I am not on a high-dose, by-drip, curative course of chemo. I’m not in hospital either.

I am at home on a course of palliative oral chemotherapy – or targeted therapy – and so far, things are going ok. The list of side-effects is enormous and that was one of the factors that led me to be cautious about starting this treatment during January. But again, so far, so good except for tiredness on top of tiredness.

The drug Sunitinib:

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Biologicaltherapies/Cancergrowthinhibitors/Sunitinib.aspx

is the first-line NICE-recommended treatment for metastatic renal cancer, so I am following where many others have led. It is a relief to have started and that all is going smoothly.

The course is 4 weeks on and 2 weeks off, repeating ad infinitum, as long as it remains effective and I tolerate it. I will have weekly blood pressure checks and 6-weekly bloods checks, mainly for liver damage, though I always worry about my kidney capacity too.

Of course, it is far too early to say whether it is having the desired affect i.e. to suppress & manage metastatic growths. CT scans in the future will show whether it is achieving that, starting with the lesions I know I have on rib, lung and duodenum.

And I am still looking forward to spring ……….

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NHS, Politics

King’s Fund speaks on the NHS under Coalition

The independent health research organisation, the King’s Fund, has published the first part of a two part analysis of the NHS under the Coalition, focusing particularly on their introduction of the controversial Health & Social Care Act 2012. You can find that report here: http://www.kingsfund.org.uk/publications/nhs-under-coalition-government

The findings make damning reading, concluding that the reforms have introduced
• Greater marketisation but claims of mass privatisation are exaggerated (my italics)
• Distracting & damaging top down reorganisation
• Complex & confusing governance & accountability systems
• Problematic absence of system leadership (my italics) making needed major changes more difficult to achieve
• Care Act has created a legal framework for introducing a fairer system of funding of long-term care.
NB but has not yet created that fairer system (my words).

I have grown used to a dumbed-down media “debate” around privatisation which shies away from a deep analysis of the Tory mantra: it’s still free at point of use therefore not privatised. That’s sadly repeated here but is so common, it is not surprising. For example, the BBC hardly ever dares say the word privatisation. Neither reports like this one or core media like the BBC, can now be expected to really examine the political values behind the Act and what the core aim of the “reorganisation” was.

This weakens the first 4 damning findings: greater marketization, damaging (& costly) top down reorganisation, confusing & over-complex governance/accountability, and absence of (strategic leadership – the Act abolished Strategic Health authorities). These aims were explicit in the Bill and were rooted in the Coalition’s commitment to a massive growth in the role of the private sector, although they always add in the voluntary sector too, as if it has the resources to compete.

£11 billion pounds worth of health services have been contracted out, on top of what was already privately provided i.e. another 10% of the entire NHS budget & the direction is upwards. Hospital trusts are now allowed to gain 49%of their income from private patients, a cap which Labour plans to significantly revise down, when re-elected, to return it to much lower historical levels as well as reintroducing the NHS itself as the “preferred provider” instead of an open market of “any qualified provider”.

As far as accountability is concerned, this must be weakened as the private sector’s role increases. And as with East Coast Rail and Hinchinbrook Hospital, Cambridge, private contractors seem to be able to walk away from contracts that no longer generate profits without penalty. Compare this to the NHS’s seeming inability to renegotiate the terms of those PFI deals which have proved to be far more costly than anticipated, even when they threaten hospital trust viability.

And strategic leadership? Well, it was abolished and the new health market would make the right decisions at the best time, wouldn’t it; the old “invisible hand” that can do no wrong. This means a gradual erosion of national standards based on sound scientific and medical research.

In short, the King’s Fund report finds that the Coalition’s “reforms” achieved what they set out to achieve but avoids the nasty political issues of public versus private. It is very important nevertheless. It should embolden the craven media to ask deeper questions about where the NHS will go in the future if left to the Tories and how it might change for the better if Labour forms the next government. But it also depends on you and voters throughout the UK (in spite of devolution!) using this kind of hard analysis to ask those deeper questions.

Less than 100 days to save the NHS. Let’s do it.

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NHS, Personal health, Personal life

Pain

As of yesterday, I have new pain in a new site, my right breast. Shout out loud pain. Worse than the pain from my left rib which is moderate by comparison. Really intense when it comes, builds and fades. Again the question: Is it a muscular strain or a new metastasis (met)? It hurts when I move or use my right arm but also when I am at rest. Got to sort it.

Since May I haven’t needed pain killers, after leaving hospital mid-March following my second operation. Now I am on paracetamol and always anxious for the next dose.

My GP has been helpful. Action decided on: ensure I get a (nuclear medicine) technetium phosphate scan which hunts down bone mets; start Sutent drug therapy for renal cancer inhibition asap; meet the GP MacMillan nurse.

This could all happen this month and meantime, I’ll continue to take the pain killers and rub my chest with Ibuprofen gel. No photographs please ;-)

And curiously, I feel a little liberated from my January deep low. Pain concentrates the mind and clears it of uncertainty about the next steps and their timing. And frees a part of my brain for a little bit of election work.

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NHS, Personal health, Personal life

Treat or not treat?

I am finding this all very difficult. After three consultations, from two consultants, during January, the treatment recommended went from commencing medication, through delay medication / apply radiotherapy to my rib, to no treatment / review in April.

The positives of this are that I’m reminded once again of the v slow-growing nature of my renal cancer. Unless growths are clinically significant or causing pain, they can be tolerated, at least for a while. But why wait if there is a drug that can halt or slow all growths? Because the drugs have side-effects which can affect quality of life. If one is “doing ok”, it is safe to wait a while.

The negatives of this are about learning to live with the knowledge that I do have active metastases and that for the moment, we are taking no action. I would have been happy with what I thought emerged as a compromise: radiotherapy to my rib which is occasionally painful and aches slightly most of the time. “Deal with what I can feel” and review drug treatment later. But that wasn’t to be.

I will have a review in April and I am clear now that whatever the risks in terms of side-effects, I should start drug treatment then. There are risks both ways and no right answer as to timing but mentally, I need to know that what can be done is being done. I would particularly like to know that the met in my rib has stopped growing and aching. That we are “dealing with what I can feel” and everything else that is in me.

In the meantime, I hunker down and hibernate, waiting for spring.

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Personal health, Personal life

Happy

Happy? Yes I am some of the time.

In spite of my recent bad news, Gina and I had a lovely family Christmas with our two sons and their partners. There was lots of happiness, laughter, discussion, enjoyable meals and willing cooks and bottle-washers. It was all very relaxing and “right”, as these times always do when there is a strong sense of your loved one’s lives continuing to move in good directions.

Two days before New Year, my friend Clive joined me for a tough walk up to Red Tarn, Helvellyn. I had no ambition to reach the top, knowing that was beyond me now, but I did want to stand at the lakeside, just at the snowline and see before me once again the magnificent ridges and headwall, plastered in snow and ice. This has been the source of many adventures year-round in the distant and recent past. To be at that place again and remember, was enough, especially on a brilliant winter’s day with clouds grazing the tops and sun slanting across snow fields. Happy!

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My legs were shattered on the way down, almost unable to bear my weight. I have been here before, in July 2010 backpacking in Wasdale and in November 2013, in Buttermere, just before my illness struck. The disease has been slowly weakening my leg strength for years without my noticing it. Only with hindsight, is it possible to understand those two earlier episodes and now, I have to adjust to the fact that my big hill-climbing days, in a snow gully with ice-axe, crampons, are probably beyond me. But that’s ok. There is still so much that I can do, with Clive and with Gina on wheelchair walks that are beautiful and satisfying.

My legs are now ok after several days’ rest. Not so my right foot which flared up in the days to follow the big walk. Diagnosis? Gout! What a laugh. Check bottle of 5 year old port. Still unopened. Check quantities of capons, game pies and sack consumed at the Falstaff Inn recently. Nil. A form of reactive arthritis, my GP calls it. In the grand scheme of things, it’s a transient and a small problem.

Where next? To Newcastle to see my renal oncologist on January 15th, that’s where. Looking forward to it. Gina will come with me. With difficult news to absorb, the solution is always the same. Get to the point where you know your treatment options and get on with them asap.

In the meantime, don’t be swayed too much by serious reportage and mournful poetry. They are only part of what I am and what I feel. Sometimes I do feel happy.

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