Medical update – Up and running for SCS surgery

For the first time in six months I travelled to the capital yesterday to attend an ‘education day’ in preparation for my spinal cord stimulator (SCS) surgery. The event took place in a city centre hotel and was facilitated by a leading member of the pain intervention team at the hospital I attend.

Seven prospective recipients of the SCS surgery and their companions attended. We were required to bring a companion so that he/she would know about the procedure and be there to offer support afterwards.

It wasn’t difficult to identify the chronic pain sufferers in the room. All one had to do was look at their faces.

I had already researched all about SCS surgery but I found the day to be both educational and entertaining. It was clear that our facilitator knows her stuff. She told us that more than 500 people in Ireland have had the surgery to date, with a success rate of more than 85 percent. Success is defined as experiencing a decline in pain levels of 50 percent or more. Some patients have done much better than that, even becoming entirely pain-free, while a few have experienced little or no relief from the procedure. They don’t know why it works for some and not for others.

Given the delicate and invasive nature of SCS surgery, there is always a trial period of about two weeks to test whether it will work for the patient or not. If it is making a positive difference, then the device will be implanted permanently.

The surgery requires that incisions are made in the upper and lower back so that leads can be placed along the spinal canal and then to the battery device itself, which is usually placed in one of the buttocks. You can turn the device on or off, or up and down, by using a remote control gadget similar to a TV remote. The device is programmed while the patient is in hospital, and can be modified remotely by the pain management team afterwards, if required.

The recovery period is lengthy. The patient is asked to be as still as possible for three to four months to give the leads a chance to take root solidly in the proper place along the spine. Sudden movement can cause the leads to move out of position, which would then require more surgery to return them to their proper spot. Nobody wants to have to go through that.

Then we were given the list of ‘Don’ts.’ Don’t bend, don’t lift, don’t pull, don’t twist, don’t stretch, don’t push; don’t make any sudden movement that might dislodge the leads. And all of this for three months. Don’t drive for four months. Don’t go back to heavy work for up to six months. Healing and recovery require that we do as little as possible for the remainder of the year, so that by the end of it, hopefully, we can live full lives again.

Almost as discommoding as these instructions was the news that we can’t take a shower for about two weeks after the procedure or until such time as the stitches are removed. Given the nature of the surgery, there is a high risk of infection if the wounds aren’t cared for properly. As the instructor put it, nobody ever died due to the lack of a shower for a couple of weeks, but lots of people have died as a result of serious infection.

Though the instructor didn’t downplay the risk of failure, she was keen to tell us about success stories, and there are plenty of them. She also promised that, if we wanted, she could put us in touch with a patient who had a similar pain history to our own and had successful SCS surgery, who could function as a friend and support along the way. An excellent idea.

All that remains now is to be given a date when to show up at the hospital for the two-week trial period. That could happen any time within the next few weeks.

I journeyed back to Limerick last night (after an hour-long diversion at Portlaoise had added to an already very long day) feeling optimistic that the SCS will ease my pain enough to allow me to function properly again. And that would be a delight.


 

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Remembering one of my worst days

I remember vividly almost every waking moment of this day last year. It was the day of my father’s wake.

Unlike the more common practice today, we decided to wake my dad at home. We wouldn’t take his body to a funeral parlor. We wouldn’t bring it to the church for an overnight stay. Instead, we would keep him at home with us in his own house for one last night.

So the house was open to all-comers. My dad’s body was laid out in a coffin in the middle of the sitting room. All the chairs were pressed back against the walls surrounding it, allowing for a free flow of mourners around the room as they offered sympathies.

In the kitchen off the hallway was all kinds of food, mostly donated by relatives and friends. The kettle was always on the boil. Neighbours, relatives and friends acted as hosts and hostesses. We did not have to worry about any of the catering or hospitality duties.

Our only task was to gather round my father’s coffin during the official wake period from 3pm to about 7.30 and receive those who came to mourn my father and to express sympathy. The circle of chairs was occupied mostly by the female members of the family, while the men – my dad’s sons, grandsons, and sons-in-law – stood by the wall in their black suits and ties. 

I did not stand with them because I was not able. I had come out of hospital just a few days before, after my third spinal surgery in six months, and was wearing a brace to support my back. Earlier that day, just before the wake started, I had sought and received a pain-killing injection from our local GP. I was also wearing two pain patches and had taken every medicine I was allowed in order to help me get through the evening.

But nothing made any difference. The pain was excruciating and unrelenting. People in their kindness shook my hand, but even the gentlest handshake felt as if my arm was being ripped from my shoulder. The combination of physical and emotional pain was almost too much to bear. Several times, I just had to go and lie down for a while.

The wake lasted for what seemed like an eternity. Though it was a dark, winter’s night, and our farmhouse is in the County Limerick countryside, people came in numbers touching a thousand from all over the country and beyond. It was testimony to my father’s popularity but also a demonstration of Irish culture and tradition at their best. People wanted the opportunity to express their condolences in person and to offer support and solidarity to our family in its grief. 

I knew only about 10 percent of them. Younger people came, flush with youth and life, friends and colleagues of my father’s grandchildren. The old came, now bent and creased by the passage of the years, friends and contemporaries of my father. And people of my generation came too, lots of them, now in mid life, friends and workmates of my brothers and sisters. From the well-dressed, well-spoken professional to the shaven-headed, tattoo-sporting construction worker, from my elderly priest colleagues in the Redemptorists to school mates of the younger grandchildren, they came – a true cross-section of that part of rural Ireland on that dark December night, 2015. 

It was wonderful that they came in such numbers, and my father would have been delighted, but in my grief and physical distress, I thought it would never end. I wanted people to come out in their droves to acknowledge my father and his goodness, but at the same time all I wanted was peace and quiet and the solace of my bed. My back was on fire, my arm hurt, and my emotions were in turmoil. I had been in hospital in Dublin when my father was taken to hospital in Limerick for what turned out to be the last time. I had never even got to visit him (we had no idea he was going to die) and how here he was being waked and I couldn’t even stand beside my brothers as a chief mourner to greet and thank those who had gone out of their way to stand with us in our loss. The only good thing I was conscious of was that if my father had died a week or ten days earlier, I wouldn’t have been able to attend his funeral at all.

Eventually, of course, the numbers tapered off as the clock approached 10pm, and the local priest led us in some prayers for his soul. We left my dad in the sitting room with a teddy bear his great granddaughter had put in his coffin to keep him company, and we struggled our way to bed, knowing that the next day, the day of the funeral, would be another test of endurance. I wouldn’t be celebrating the funeral liturgy but I was going to preach. I wanted to do that last thing for my father, no matter how difficult it would be, and I did. I’m glad about that.

Now a year has passed, and the shock and grief have passed too. We will gather for his anniversary celebration tomorrow with sadness but also in gratitude for the person he was and the impact he made on so many. While my emotional turmoil has eased, my health problems continue. Unfortunately, my back pain is one thing that has not changed since exactly a year ago.

Seeking reasons to stay alive

I am going through some dark days. Anyone who has happened across this blog will know about my battle with chronic pain. It’s a battle I have been fighting for more than two years now, and it’s a battle I’m finding it harder and harder to fight. It frightens me to think of the number of hospital visits I have made, the number of medics I have seen, and the number of procedures I have gone through, not to mention the amount of money I have spent.

And yet, and yet, the pain is more deep-rooted and widespread now than at any time in the past. It’s wrapped around my lower back and my left thigh. It digs in and through me – and no pill, no opiad, no medication of any kind can make a dent in it.

I try being more positive, I’m trying journaling, I walk a lot, but nothing seems to make the slightest impact.

I’m awaiting news on a spinal cord stimulator, but though I want to have that procedure, I’m also scared of having it. It will mean more surgery on my already fragile body, and of course there is no guarantee that it will ease my pain. If I were to have it, and it did not work, I doubt that I could cope with the disappointment.

I know that in many ways I am lucky. I have a community that supports me and that allows me to do as little or as much work as I can manage. I don’t have to worry about my next meal or how I will pay for a consultant’s visit.

But it makes me feel guilty, too. Because I earn nothing, and my tear-filled, sorrowful presence only upsets people. I am making no contribution.

And as each day turns out as miserable as the one that went before, I wonder about my future, for I know that I cannot go on living like this. I do not have the strength. My spirit is sapping. My motivation is slipping. My faith is weak. I can’t take much more.

And so I seek reasons to keep on going. What is life if there is no happiness? Why go on if there is only spirit-crushing, unrelenting pain, day after day, week after week? I do try to hold on for the sake of my mother and my family, and because I have enjoyed being alive for the 52 pain-free years that I had, and because I want to build up the life of the community and the church.

But it’s difficult.

Another crushing hospital stay

After 12 days in hospital, I returned home on Saturday. Twelve days of disappointment, hope and, ultimately, despair. I am back in Limerick more broken than before I left it.

I had a reaction to the first drug they tried on me. It was being funnelled in through a little tube in the stomach area, but that area became inflamed and sore. They switched to an oral form of the drug. The pain eased slightly. I thought there was light at the end of the tunnel but after a couple of more days it became clear that this new drug was failing too. So, ever the optimist, the doc change me to another medicine, again to be taken orally. As they increased the strength of the drug every day, they reduced and finally eliminated the pills I was on. This new drug seemed only to be making me groggy, but I was hopeful that once I returned home, to my own environment, I would notice its positive effects.

Then I started being physically sick, throwing up the meds I had just taken. I was sleepy and nauseous, and all the time the back pain continued to burn me up as before. So, following a discussion with the doc yesterday, it was decided to abandon the new drug and return to my old one – the same ineffective one I was using before my fruitless hospital stay.

To say that I am disappointed is an understatement. I am crushed. The final option open to me is the spinal cord stimulator, but it could take a month before this happens. I want to have it because I will try anything to reduce my pain. And yet I am scared, because if it fails, there is nothing left. It will be the end of the road.

The doctor, like all the others I have dealt with in the past, started off full of easy optimism. “Eighty or 90 percent of people respond very well to such and such medication. We’ll get you sorted.” Then, when that med fails, he shrugs his shoulders and says, “Well, we’ll try this other one so. Up to 90% of people get great results from it, etc, etc.” And when that in turn fails, and I ask why it hasn’t worked for me, he says that I fit into that difficult tiny percentile of people who are unresponsive to various interventions. Which is so devastating to hear. The disappointment as much as the pain is killing me, literally. I’d rather docs didn’t offer false assurances but I suppose they have to be positive for the sake of their patients.

Two years ago I would not have believed that there were people in the so-called First World who had to live with chronic pain. I thought medicine had advanced enough to ensure that people did not have to suffer 24/7. But now I know that there is a vast community out there living with chronic pain, whose best hope is a few hours of relief every few months, if even that. I have increased empathy for people I see who are bent over or in clear physical distress. It is a lonely place to be.

I am 54, and I can’t imagine going on into pension or old age like this. I can’t remember what it is like to have no physical pain, to go to bed looking forward to the next day and not dreading it. The disappointment and the despair are killing me, even if the physical pain on its own won’t finish me off.

Hospital blues

I am now in hospital more than 24 hours. In terms of facilities, it couldn’t be better – spacious room, big tv, wonderful menus (I might add to my miserable 62kg weight), caring staff. A few days in this place would be a lovely break were it not for the reason I’m here, which is to try to calm my pain.

A line was inserted into my stomach yesterday. It carries a strong painkiller, which should begin to ease pain after a few hours. Alas, so far it has done nothing. The pain has not diminished. It’s as if the line had not been inserted at all.

Of course, there have been the usual reassurances – give it time, don’t panic, let’s see what happens over the next couple of days. I know all that, and yet it’s hard not to feel disappointed.

I know, too, that things could be worse. I have a cousin who has been in the same hospital bed for more than a year, and who displays extraordinary resilience. I marvel at his fortitude and determination. I must try to hold onto hope, even if I have always been a glass half empty person.

Back to hospital I go

It’s been a while since I blogged, mainly because there was nothing new to report.

Now, however, I am preparing to return to hospital. I will be going in on Monday and will remain for up to five days while they try a different drug out on me. If that doesn’t produce the desired results, then I will be getting a high velocity spinal cord stimulator, which, the consultant assured me, can reduce pain by up to sixty percent. This is an electrical device that disrupts pain signals.

It’s a slow process, though, and may take a couple of months before it is put in place. If I do end up with the stimulator, not only will I be screwed (I have seven screws in my back), I will also be wired as well. When I die, I might as well be sold for scrap.

So, I’m hoping that the journey I am about to take will be the one that brings me some comfort and hope.

What I said at my dad’s funeral six months ago

It is six months today since my father died. Though time does heal the pain, it is still so difficult to believe that he is gone for good. I will never forget the six am call from the hospital summoning us all to his bedside to say goodbye.

He had been in hospital for a week with a chest infection, but we had no idea that he was never going to come home again. That phone call left me dazed and confused. It had only been a few days since my third major back surgery and I hadn’t been able to visit him in hospital. Now I was struggling to put on my shoes and socks as I tried to process the contents of the phone call. He had clearly deteriorated overnight, and I had never even been to see him.

When I got to the high dependency unit, having been picked up by my brother, most of the immediate family was already there – my mother, herself seriously unwell, my sisters and their husbands, my brothers and their wives, and several of the grandchildren. My father was propped up on the bed, an ugly breathing mask obscuring most of his face, deeply unconscious.

I held his warm hand while others held other parts of him, and we told him how much we loved him and what a wonderful husband and father and grandfather he was, and that everyone was here with him now and that all would be well. And we prayed as he received the last rites.

He lived for just under half an hour after his breathing mask was removed. He shuddered a little at first and then gasped for air, his puckered lips trying desperately to suck in as much as he could. We watched and cried and spoke to him and prayed, hoping his last agony would pass quickly and yet not wanting him to go, hoping and pleading for some kind of miracle.

And then, at about 9.40am, he breathed his last. We watched, waiting, hoping he might pick up again, hoping he might breathe once more, but he had gone from us. His battle had ended, he had finished the race. He had just turned 84.

There’s not a day when we do not think and talk about him – but it’s mostly happy talk and happy memories. For he was a good and gentle and honest and upright man, and we are so glad to have had him for so long as husband, father, grandfather and great grandfather. He enjoyed life and was a happy man who showed love and knew he was loved.

He adored sunshine and would be sitting outside these days soaking in as much sun as my mother would allow. We remember him in a special way on his sixth month anniversary and pray that he is now enjoying the fruits of a live well lived.

These are the words I spoke at his funeral on December 4, 2015.

My father always had a very specific criterion by which to measure the success or otherwise of a funeral. He did not measure it on the size of the congregation; he didn’t judge it on the length or depth or wisdom of the homily; he didn’t assess it on the number of mass cards or floral wreaths placed around the coffin; nor was he swayed by the beauty of the singing or the grandeur of the liturgy or the tears that were shed or even by how good the meal was afterwards – and he loved his food. The one criterion that mattered, the only criterion that counted, was the number of priests present. The bigger the number the more successful the funeral. I think he would have judged this to be a good funeral.

My father was no intellectual, and nor did he pretend to be. Like so many others of his generation, he didn’t finish secondary school. He had, however, a real wisdom, acquired not from the study of books, or from years in the classroom, or from an intellectual curiosity, but rather something innate, and richer still, rooted in the rugged turf of Croughmarka where he drew his first breath just over 84 years ago. He knew the important things, the things that mattered, the importance of family and faith and fidelity and principle. He didn’t even have to think about them. He was moral, upright, responsible, decent, humble, loving, simple and good. And these most important qualities came naturally to him.

He spent more than the first quarter of his life in the hill country of Croughmarka, on the family farm, but then in his late twenties he had one very, very lucky break – he met my mother. They were wed in 1960.

She was his fortress, his shield, his solid foundation, his rock of safety and support without whom he would not have lasted so long or so happily. He used to boast that they never had a row – and they didn’t. It helped, of course, that he knew my mother was the boss. They had a relationship that was the essence of mutuality, one of total interdependency. He loved her and she loved him; he would do anything for her and she would do anything for him. Unconditional love.

My father was sensitive. A big softie. He cried easily, and wasn’t ashamed to show it.

He was tactile. He liked to express affection, and wasn’t afraid to demonstrate it. He loved to reach out to touch people, and to hold long to your hand with his warm, calloused hands, and to give big, tender bear hugs. Every time my mother visited him in hospital this past week he tried to pull her as close to him as he could. He let those he loved know that he loved them.

He was hard-working. For as long as he was able, he put in long hours, from sunrise until nightfall. Industriousness never frightened him – he thrived on it.

He was of the land and loved it. Farming was his vocation. He lived in sync with the rhythm of the seasons, the rise and fall of nature. The soil was elemental to him.

He was progressive. He was one of the first farmers in our part of the country to remove ditches and dykes and install paddocks, to build a state of the art milking parlour, and to replace churns with a bulk tank. So forward-looking was he that in 1972 the Irish Farmers’ Journal devoted a two-page feature to him entitled ‘This young Limerick farmer has a bright future.’

He was an extrovert. He liked people and loved talking. A trip to the village always took longer than it should for he always met people he had to talk to. His severe deafness of recent years was a very big burden because it meant he could no longer interact with people the way he wanted.

He was clean living. He was a Pioneer for almost 60 years, and, fearing a very quick divorce early in his marriage, he gave up cigarettes. He didn’t gamble, and he didn’t waste money. He lived a good and simple life.

He was straight-talking. If you put on weight, he’d let you know. If you got a new spot on your face, he’d be sure to point it out. But always without malice. Forthright and honest were just the way he was.

He enjoyed sport, especially hurling. One of his biggest burdens was living in a house of Limerick supporters. He could never understand why we could not support Tipperary under any circumstances while he was generous and magnanimous enough to support Limerick, when they weren’t playing Tipp. Late in life, he developed a mild interest in the fortunes of Liverpool Football Club, because of my passion for the club. But hurling was always number one.

The highlight of his year for many years was going to the All-Ireland hurling final. It didn’t matter who was playing – it was his only day off in the year, and my poor mother was saddled with the milking and the cows in his absence.

He was an old-time Catholic. He wasn’t a traditional Catholic in an ideological sense or out of a nostalgia for the past, or fear of the future, but out of a simple faith. His religion was deep rooted, but it wasn’t unquestioning. Several times in recent years, when my mother would suggest the rosary, he would protest, thinking of the setbacks that had befallen the wider family and himself, and of the weariness of the world, and say ‘what’s the point.’ But he would take out his beads and pray. The next day he would be the one to suggest the rosary. He said his prayers every day of his life.

In recent years, he lost his hearing; then his walk, then his balance, then his independence. The one thing he didn’t lose was his appetite. And nor, thankfully, his head. He had a clear mind and a firm grasp of things right to the end.

And it was when he had lost those things that family and love took on even greater significance for him. For it was my mother who fed him and looked after his medication and helped him go to the bathroom; and it was his grandchildren who tenderly helped him get ready for bed every night; the man who had become like a child; the children caring for the man. We are comforted that he never had to go to a nursing home; that he was able to stay at home with his loved ones, almost to his last, laboured breath.

To sum him up, my father was:

Essence of decency

Paragon of virtue

Exemplar of faith

Model of love

He loved us and we loved him. He – and we – were lucky. The world was enhanced by his presence, and it – and we – are diminished by his passing.

We are sustained by our memories, but, even more, we are sustained by our hope in the resurrection. That is our Advent hope. That is our steadfast belief. We know we will meet him again one bright, shiny, day, unhandicapped by age or pain or disability or the wear of the years.