NHS, Personal health

A pain in the balls; a pain in the neck?

In the last two weeks, I’ve had a couple of consultations about a pain in the balls and a pain in the neck.

The former is real, mildly uncomfortable and due to a small nodule behind my right testicle. Naturally, thoughts turn to metastatic disease but reading around the subject, that’s very unlikely for renal cancer. Nevertheless, it needs to be diagnosed so a meeting with my GP led to an ultrasound scan last week. From the scan, it’s not cancer but looks like a “granuloma”, a small nodule due to a mild infection. So I need to see my GP again for advice on treatment to clear it up.

The latter – a pain in the neck or for that matter in the head – is not a current problem. It’s just something else I have thought about during these last months of illness. Since metastatic spread has already occurred to my former right adrenal gland and to my thoracic spine, couldn’t it have also spread to my cervical spine or brain? Renal cancer does metastasise to both. Though I have had CT and MRI scans, they have not yet covered neck and brain. It is just time, I think, to check them out.

Hopefully, there’ll be no problem. On the other hand, if there is a lesion, it might be operable before it causes me symptoms and crucially, further loss of nerve function. But I’m optimistic that there’ll be no lesion. So yesterday, I saw my oncologist in Carlisle and he agreed that my next regular CT scan this autumn would cover neck and brain. The following one next spring will then re-focus on chest and abdomen.

I continue to ask questions and nudge my treatment in sensible directions when needed. Next week, I have my first physiotherapy consultation since asking my GP to chase this up a few weeks ago. I am looking forward to that discussion and the physiotherapy sessions, that I trust will follow. And I also have my monthly session with my renal consultant.

I’m being well cared for. Long live a public, not-for-profit NHS.

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Personal health

Instant Primary MS VI – Report Card

This is my way of summarising my neural deficit symptoms, by comparing them to Gina’s similar range of symptoms caused by her MS. Unlike her, I am recovering lost function and currently, I am where she was in the very early years of her illness.

Muscular strength/coordination: I have improved a great deal since getting out of hospital and recovering from the abdominal operation. I am using an exercise bike regularly and building up my walking strength. Last weekend I managed a 4.5 mile walk, unthinkable until recently. My balance is still dodgy, so I am using a walking stick. There is still some way to go in regaining core and leg strength and I don’t know how long it will take me to achieve the maximum fitness possible. I am due to have a consultation with a neuro-physiologist soon, with whom I can discuss these issues. Critically, I am managing to care for Gina at home. Significant improvement but feels like a long way to go yet.

Planet Lumpen Cold: my shorthand for the truly horrible range of symptoms it represents: heavy legs that are not one’s own, relentless cold feelings deep in muscles and random cold tingling. Easily the worst symptom just before and after my spinal decompression operation. I am delighted to tell you that Planet Lumpen Cold has almost gone. I still have minor tingling in the soles of my feet but for the moment, that is it. Massively improved.

Fatigue: I am less easily fatigued by activity but after an active period, rest is essential to recuperate. I have got over the phase of mental fatigue. Fatigue can be managed easily by resting up when I need to.

Digestion/bowel: Eating, digestion, bowel movements are all normal. AOK.

Urinary function: Practically normal now, with only some minor problems at night. Significant improvement.

Overall, I have come a very long way since leaving hospital 4 months ago and I am determined to improve my fitness to the maximum possible set by the nerve damage I suffered.

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Personal life

To my “daughter”

Joe & Sabrina 5/7/2014

Glad in my heart you love my son
Have married him, have joined as one.
To be his friend, companion, guide.
To make a life together by his side.
To help him be himself and more
Than he ever could be without you.
To be his rock, his grounding floor.
To help him find himself, be true.

Love of the heart, the blood, the bone
Flows through this day, has grown.
Love of the bone, the heart, the blood,
Flows through this night, in flood.

Glad in my soul that he loves you
Needs to be with you, wants to be true.
To be your guide, companion, friend.
To be your protector ‘til the end.
To love you for yourself and more
To see you grow, to help you soar.
To be there for you when you sorrow,
Fly to your side, straight as the arrow.

Love of the heart, the bone, the blood.
All that is gentle, pure and good.
Love of the heart, the blood, the bone,
Lovers together, no more alone

6/7/2014

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NHS, Personal health, Personal life

A hydrocortisone MOT

I am back from the Royal Victoria Infirmary’s Programmed Investigation Unit. It ended up being a short two day stay with a “Synacthen” test on day two, then home. The test uses an injection of the hormone ACTH, produced by the pituitary gland, to monitor the levels of hormones released as a consequence by the adrenal glands. Differing levels of response help to diagnose different diseases. The hydrocortisone tablets one is taking, have to be stopped for a period before the test. I was lucky that this was just 24 hours, saving me a longer stay in hospital.

They were looking to see if I still have any level of cortisone production. If there is, it will not be from my right adrenal gland because that has gone now, along with the metastatic renal tumour that had taken it over. There is some chance that I may still have some adrenal function on my left, though the removal of my left kidney (because of my original renal cancer) in 1997, will have had an impact. Either the adrenal was not removed but was impacted adversely by that operation or it was removed altogether. Amazingly, in spite of efforts on my part, handed over to my doctors, no-one has yet chased down the detailed operation notes from 1997, so that we know which scenario is correct.

Anyway, this Synacthen test will determine the issue and allow my endocrine consultant to calibrate the level of hydrocortisone medication that I will have to take for the rest of my life. I don’t expect much change from my current regime as I feel ok for the moment. I am waiting for a phone call and letter with the results. It will be good to sort this. One more follow-up done and dusted and a chance to draw breath and look to the future, including the wedding of my beloved second son and his intended, Sabrina on July 5th.

Gina and I are really looking forward to the wedding and a happy gathering of two families. Lots of brightness and light and love. Brightness and light and love to you all, my readers xx

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NHS, Personal health, Personal life

“No significant cancer”

My oncologist has replied to my letter about the dodgy duodenal lymph node picked up on my April CT scan. He doesn’t address the question of this lymph node directly and adds a caveat that a non-contrast CT scan is hard to evaluate: my surviving kidney can’t take the shock from contrast medium in my blood. But he does say the specialised urology multidisciplinary team meeting which reviewed the scan, felt that there was “no significant cancer”. He goes on to say that he is “extremely confident that a surveillance policy ” is entirely appropriate.

So there’s still a question mark but not quite so big. This is more or less what I expected his answer would be but it is reassuring nevertheless. So he has confirmed the watch and wait strategy and the treatment options: surgery if I get an isolated metastasis that’s operable and systemic treatment if disease was more generalised. Hopefully it will be neither for a long time to come.

Should I need a systemic approach, the treatment would be with a “tyrosine kinase inhibitor” which would suppress growth. So there are still weapons in their arsenal.

Next week I go into the RVI’s endocrine unit in Newcastle for 2-3 days to test my levels of hydrocortisone production (if any) when my hydrocortisone replacement tablets are withdrawn. Again, I am not expecting big changes. With my current medication I feel fine most of the time. It will be nice to get this follow-up work out of the way and be able to look forward to my youngest son’s wedding on July 5th, my friend’s wedding on August 9th, at which I’m best man and a summer largely without consultations. Life goes on …

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NHS, Politics

Cameron brushes aside MPs’ concerns about threat to NHS from the TTIP

Here’s a link to National Health Action party piece about Cameron fobbing off questions from Ed Miliband and other MPs about the need to protect the NHS from the effects of the Transatlantic Trade & Investment Partnership treaty, currently being negotiated by the USA and the EU.

http://nhap.org/cameron-makes-light-of-ttip/

It’s based on parliamentary monitoring work by the World Development Movement. Kudos to them.

It does not inspire confidence that Cameron understands and/or cares about this risk. But then he leads a Coalition government which is busy privatising the NHS. For them, the NHS is just another “service industry” that they believe can benefit from competition.

Why are the Tories and Lib Dems hell bent on privatisation? Already, following the passing of the Health & Social Care Act 2012, £20 billion of contracts have been made with the private sector. Yet a recent study by the respected Washington-based Commonwealth Fund shows that the NHS comes top in comparison with leading health systems around the world.

http://www.commonwealthfund.org/publications/fund-reports/2014/jun/mirror-mirror

One can only conclude that the Coalition approach is not about improving health outcomes and everything about ensuring private health providers – most of them significant Tory party donors – can burrow their way into the NHS for profit.

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NHS, Politics, Spirit of 2015

Shut the transatlantic door to more NHS privatisation!

Heard of the TTIP, the Transatlantic Trade & Investment Partnership? It is currently being negotiated between the USA and the EU and is designed to align US and EU competition laws. In its current form, public services are only exempt if wholly private, which of course, the NHS no longer is, unless special exemptions are negotiated. Moreover, since the Coalition government passed the Health & Social Care Act 2012, Labour’s restraints on private providers in the NHS have been removed and privateers are winning billions of pounds worth of contracts already. Up to 49% of NHS hospital income can now be raised from private patients. If the Tories win the General Election in May 2015 or if another Tory/Lib Dem Coalition is formed, the privatisation floodgates will be opening wider and wider.

How do we stop this happening? Right now, we can let the Coalition government know that we do not want a “TTIP” which does not protect the NHS from further privatisation. You can sign the 38 Degrees petition right here:

https://you.38degrees.org.uk/petitions/keep-all-health-service-provision-exempt-from-us-eu-free-trade-agreement

Secondly, you can make sure you vote Labour next May and ask your friends and family to do the same. Only Labour is in a position to form an alternative government, either as a majority or less desirably, in coalition. You can help ensure it is the former and that the HSCA 2012 is either repealed or heavily amended to remove the mandatory requirements to put NHS services out to tender in a competitive market. Both Ed Miliband and Andy Burnham, Shadow Secretary of State for Health are on record as committed to repealing the HSCA. The latest take on this policy will be contained in a speech Andy Burnham will give today to senior NHS managers at the annual conference of the NHS Confederation. You can read about this here:

http://www.theguardian.com/society/2014/jun/05/labour-to-roll-back-competition-in-the-nhs

We need to monitor NHS policy development in this pre-election year very closely, including the destructive role the TTIP will play unless the NHS – and other vital public services – are fully protected within it. The General Election in May 2015 will either shut the door on further privatisation of the NHS and start rolling it back or mark the moment when we lose this great public service forever.

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