Personal health, Personal life

Two weddings & some physio

So the much longed for and anticipated weddings of my son Joe and my friend Clive have taken place. For so long they were on the far horizon and between them and me were weeks of treatment and recuperation. But they were worth waiting for. So much joy and love at Joe and Sabrina’s wedding in Clevedon, Bristol. So much love and light at the wedding last weekend of my friends Clive and Nicola in Shrewsbury Abbey. I was well enough to enjoy both and at the second, to have a dance in the traditional way of ageing men at weddings i.e. embarrassing moves from a distant past. Well, I enjoyed it and I didn’t fall over ..

So now I have a new “daughter”, Sabrina and a very happy son Joe – http://bawylie.com/2014/07/08/to-my-daughter/ . Gina and I are delighted for them both and are looking forward to seeing them next weekend.

It was an honour to be best man for Clive, a friend twenty years younger than me and I managed to deliver a speech that didn’t bomb.

In between, I had my head and neck scan – results to follow – and start a course of physiotherapy. I now have a daily routine of exercises to perform to strengthen my core and my legs. Discipline required! I will try to keep at it and get back to regular walking. Tomorrow I am off with my other friend Clive, to walk Ullswater shoreline from Howtown to Glenridding, about 7-8 miles. I’ll be very pleased to finish it, another milestone in my recovery.

The medical checks are still happening, though thankfully at longer intervals. It’s reassuring that they are in place but good that they are less frequent. More time just “to be”, rather than “be ill”. That mental adjustment takes a while.

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Personal life, Politics

Gaza

For me this year has been a battle between life and death. Lately life has been winning. I hang on to hope. I am not one to despair but the “war” in Gaza brings me to the edge of it. It is 3.30am in the morning and I cannot sleep. Hence this:

Gaza

And who will come to speak in memory of justice
Lying in the dusty grave of Gaza, or her sister peace
Shrouded in the sheet beside her?

And who will come to sing the praise songs for the beauty
Of this life that now lies twisted here,
Stretched out beside the child of hope, despair?

Will no-one come, will no-one sing
Or hear the funeral bell that rings?
The mourners shall they turn away and hold
To certainties that live and breathe
The fiery breath of shot and shell
The here and now, the deathly knell
Of eye for eye, of soldiers bold?

Behold the spirit of a people rent and blooded
Its moral force all torn and hooded,
The last to be interred but lately
That spoke of justice, peace and beauty
Who lived a life of hope and not despair.

30/7/2014

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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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