A quiet moment…

It’s the end of a tough week here. The cancer situation continues to impact our lives in ways we’d never imagined.

Lisa’s spending increasing amounts of time in Belfast looking after her mother. It’s a life of shopping, doctor and hospital appointments and tending to her mother at home. She fits in work when she can, but it’s difficult for her. And, as I know, when you’re embroiled in a situation where a parent has cancer, your taste for other things in life tends to dry up. You become absorbed in the crisis.

I’ve effectively become a full-time house husband – which has its up- and down-sides. Mostly downsides, to be honest. I spent a full eight hours on Friday cooking, cleaning, washing clothers and dishes and preparing the house for guests who were staying over. I should be working too, but it’s becoming increasingly difficult to find a window of time in which to get anything productive done.

To cap it all off (moan, moan), I’ve got this weird insomnia thing going on at the moment. I go to bed, then my arms and legs get restless and I end up bouncing around the bed trying to get comfortable. A couple of nights this week, I’ve ended up going downstairs and watching TV until the sensation fades and I drop off. Usually around 4:30am.

The house-husband role is a bit of a daunting task. But it’s becoming necessary. We’ve no idea how long this situation is going to continue for, and we need to set up some kind of routine for the kids. They’re feeling Lisa’s absence, and they’re becoming difficult as a result. Especially the older two – 8 and 6 respectively – are not responding well to coming home and finding mum missing.

As this looks like an increasingly long-term thing for us, I need to step up and stabilise the house. That means thinking about meal plans for the week. Knowing what’s coming up for the kids – appointments, various classes, what homework needs done each night. I need to keep the washing of clothes and dishes running smoothly – we’ve never been good at those. And of course the house needs to be kept clean. But the worst part of the last couple of months is our diet has become abysmal. We’re eating crap daily because the mealtimes aren’t being planned.

On the dinner front, I’m thinking about meals that we can make batches of – chilli, stew, things like that. These’ll get us started while we refine the menu and learn how to make healthier and tastier meals. Any ideas? Tell me in the comments!

(p.s. I know this sounds like a ‘me me me’ post, but I can’t really speak for what Lisa’s going through. I do think it’s important to mention the knock-on effects though, which is why I’ve written this post from my own point of view.)

Cancer everywhere

Let’s come straight out and say it: Lisa’s mother has been diagnosed with Ovarian Cancer. The events that led up to this have been unfolding over the past month, and a fairly concrete diagnosis came something over a week or a fortnight ago.

Lisa, naturally, was devastated. She didn’t help herself much by doing some web research into the survival rates and details of the disease. Seems Ovarian Cancer is dubbed the ‘silent killer’…

I can only speak for myself here, of course, but the notion of Lisa and I losing one parent each over the last year was hellish. And having come out one end of a cycle of hospitals, funerals and family complications, the thought of another? I just felt numb, to be honest.

The aftermath of my own father dying hasn’t been a pretty picture. My mother and younger sister are drowining in guilt and grief. My other sister did some fairly horrible things too, including stealing money and documents when we were sorting out the will. And as I devoted myself to my father during his hospital stay, our business suffered.

It’s funny that the tables are turned this time though. I’ve tried to be as useful as possible around the house while Lisa has made herself available to her mother for moral support and more. I think we both understand that it has to be this way.

Luckily, the latest consult seems to suggest that Lisa’s mother detected this cancer really early. Each subsequent consult with a new doctor seems to downplay the extent of the spread. It may be a reasonably straightforward operation followed by some chemotherapy. In other words, no-one’s suggesting this is a terminal case.

How to describe the prospect of another cancer fight? Enormously unsettling. I’ve seen first hand the damage that bereavement did to our family – to the point where I barely want to speak to my mother on the phone. People don’t react in a predictable fashion when they’re scared and/or grieving: some bury their heads, others want to be left alone, others try to turn it into their drama.

Hopefully what’s going on with my mother-in-law will work out well. Strangely, when my father died, my in-laws seemed more attuned to the fact that I was suffering than my own family. It’s horrible to see them going through this so soon after my dad.

One last letter…

I don’t think I’ve called you ‘father’ in years. I adopted the monkier of ‘Chib’ for you after years of cleaning chimneys together. It got shortened and distorted from ‘chimney sweep’, didn’t it? But it stuck. My nicknames always stick.

The point is, you’re gone now, and everything you are or were has been added up: father, friend, protector, provider, verbal sparring partner, simultaneously my biggest supporter and critic, grandfather to my children and so much more. And all that you were is suddenly taken away. For such an unassuming guy, the void you left behind is incredible.

I thought the worst of it was watching you in pain. Suffering, declining. Your legs and arms getting thinner until the skin wrinkled around your joints. Your hacking cough that would overtake speech and leave us unable to talk. And those dreadful, painful sores that covered your tongue because of the oxygen. One of your sisters put it brilliantly in the obituary column: “a short tragic death, suffered with dignity” or words to that effect.

And for a brief while after you died, we were consumed with arrangements: wakes, funerals and paperwork. Still are. I felt strangely disconnected from your body in the coffin. You looked overdressed in that suit. I could see discolouration starting to creep in. I often wonder that people find comfort in visiting graves when the person they loved is decaying beneath their feet. What strange customs we have. All of it reminded me that you were gone.

As we settle back into our daily routines for the first time since Lourdes, there’s a claustrophobic shroud of sadness wrapped around me. Is this grief? Well, it pulsates from a numbness, a staring into the distance to a silent scream that seems to rise from deep within me. At its worst, it feels like every part of me, man and boy is ridden with anguish at the loss of a father. Memories replay themselves in my head – childhood memories, recollections of the hospital, times we laughed together, times when we frustrated each other. Life. Yours and mine.

And it’s not just the memories that bring sadness. It’s the cruelty of being denied any type of future with you. You’ll never phone again on a Sunday night for a chat. When we call at Ballycastle, there won’t be any sparring over whose turn it is to buy some beers. The children won’t remember much about the grandfather who used to chase them around the house. I’ll never received another of those awkward emails that ends with “That is all for now.” And so your legacy diminishes. Like your mother before you, who will remember you when my generation vanishes?

You were such a funny man to know. Your life was never complicated or ambitious, yet I always felt you regretted coming out of work to care for my mother. Ironically, the more you did for her, the more hopeless she became. It surprised us all when she raised her game to be at your bedside throughout your illness. I know how much you enjoyed your work, you helped so many people. While most of the world these days is seeking fame and fortune, you were making a difference to people close to you.

We got a short time in the hospital. Two months to say our goodbyes, although we expected more. Perhaps a few more months. I hope that I managed to show you how much you matter to me. As a family, we were never great about sharing our feelings, but cancer is a game changer. Back when you were well, I’d bear-hug you, just to make you uncomfortable.

But all of that’s over now. All of us, we have to get used to you being part of our past. It’s like we were all travelling along nicely together and you stopped abruptly.  We’ve continued on, and the only way we can see you is in looking back. I’ll miss our conversations, and I’ll miss making fun of you and all of that history we had together. I’ll miss showing you how to do things on computer and fixing the printer that you managed to break at least once a week.

Most of all though…I’ll miss you.

Deathbed scenes and false alarms

To say that the last few weeks have been stressful would be pushing the art of the euphemism to its absolute limits.

My father’s condition has deteriorated (he has cancer) since his second round of chemotherapy. Suddenly, I’ve been dealing with some overwhelming emotions – intense grief and a sadness that I’ve never felt before. As the prospect of him dying becomes ever more real, feelings and memories have been jumping out at me, helping to crystallize my father’s role in my life.

My nickname for my father for years has been Chib. In the last week, he’s come close to dying a couple of times. He’s even managed to fool the hospital staff, but would inevitably recover overnight as we all sat close by.

It suddenly became important to me to tell Chib how I felt about him before he died. After the first scare, I thought I’d missed my opportunity, so on the second scare, I wanted to make sure that I had a heart to heart with him. I got a text message during Rachel’s dance show, and rushed to the hospital before I even had a chance to see her perform.

After a frantic dash from Lisburn to Belfast, I arrived at the hospital and ran to the ward, whizzing past uncles and aunts who were clearly assembling as well. The room was packed with relatives, and I glanced at Chib lying on the bed looking failed with his breathing shallow. Before I could stop myself, tears were streaming down my eyes and I thought I’d missed my chance. I might have spoken there in front of everyone, but one of the aunts in the room realized that I wanted some time alone and kindly took everyone else out (except my mother).

The words came tumbling out of my mouth in what was probably a frantic stream: reminiscences of things we’d done together, gratitude for always being there for me, and that above all else, I loved him and would sorely miss him. When you suddenly start to sum up the life of a loved one, you realize how important they’ve been to you. And although we rarely (read: never) shared our feelings openly, it became important to me to share this with him before the end, before he became incapable of understanding the words…

In the end, it turned out to be a false alarm. He lasted out the night, and seemed to be recovering from the low ebb.

Though my father continued for another couple of days, I felt oddly at peace after my deathbed chat. Whether he heard me or not (the nurses say that hearing is the last thing to go), I felt that it was important to thank him before the end. Even if my regular presence at his bedside wasn’t a clue to my feelings, I hope that the words helped.

(Apologies for the change from present tense to past tense – I wrote this before my father died and finished it today).

An impending death in the family?

This could be quite a difficult post to write, because as I type this, my father is seriously ill in hospital. The outlook is not good for him.

All of this started almost three weeks ago. We had returned from a short trip to London and the very next morning got a phone call from a family member in my hometown. The shocking news: my father had been taken to hospital…in Lourdes. I raced across to France to help organise my parents’ return home, and heard the French doctors’ diagnosis that he appeared to have two have two tumors and two aneurysms.

We returned home on the 18 April and my father was taken straight to the local hospital, where he stayed for a few days. However, he was released because they couldn’t do the required tests straight away. He went back to hospital to have a tissue sample of the suspected tumor in his lung last Friday.

But by Saturday night, another phone call – he’d been rushed to hospital after collapsing in the house. He was having breathing difficulties and dizziness. I went straight to the hospital, and met my worried-faced family. While we were there, he started taking serious chest pains and was hoarsely crying out in agony. Word came from the doctors that he had some kind of chest infection which was affecting his breathing. But, boy did he look bad at the height of those pains.

Dealing with family stuff

Right now, I’m burned out on family stuff. As hard as it is to watch my father deteriorating, I’m trying to keep my mother focused on practical things (she’s not a clear thinker at the best of times), and not to become to maudlin, at least not right now.

The eldest of my two sisters is being insufferable though. I won’t go into the details of my dislike of her, but that dislike is deep-rooted and long-lived. She acts like a petulant, moody teenager (she’s 31) and sulks when all attention is not on her. Now, any normal person would respect the seriousness of the situation and put their own issues on the back burner. Not my sister. She’s storming out over trivial nonsense on a daily basis, just for the attention.

Coupled to that, there’s clearly a very negative mood in the family right now. Given our gene pool’s predisposition to cancer, and the vague diagnoses that we’ve had to date, it looks like my father may be heavily riddled with cancer. We don’t have confirmation of that, of course, but our collective Spidey-senses are tingling.

Anyway, there’s much noise right now: relatives enquiring after him, my mother and sisters talking about wills and possible funeral arrangements, a bit of antagonism about certain aunts trying to take control of the situation. Blah blah blah. I’m able to cope with the practical stuff extremely well, but family politics are quickly wearing me down and tiring me out.

My brood

There’s been a ton of disruption to my own family. I’m having to disappear back to my home town for a few days at a time. Lisa’s coping admirably, but she was shocked when she finally made a visit to the hospital. We took the kids along and they were pretty shocked. In fact, I’ve never seen them so well behaved and silent in a public place.

And my reaction?

I’m doing remarkably well when I’ve got something to keep my mind engaged – like making arrangements and making sure my mother remembers to eat. I was extremely businesslike in France, and likewise when we got him into hospital back home.

Right now though, I’m tired. And more emotionally drained than I can remember being at any other time in my life. For the most part, I’m coping well, although I find myself becoming teary whenever I think about after he dies. Who’s going to manage the wake? Who’s going to say a few words at the funeral? Will it be me? What will I say? I don’t know. I did have a brief break in my composure this evening. I couldn’t stop myself, it all just became so overwhelming.

On an intellectual level, this is testing all my beliefs about death and illness to the limit. My core belief on this is that death is the end. Once you die, it’s like turning off a television set for the last time. No picture, no sound. And I’ve read enough Buddhist literature to accept that death is inevitable and we must come to terms with that. And if I’m honest, my sadness is for the man who raised me going through such pain and rapid deterioration right now.

I think I can handle his death, when it happens. It’s just really upsetting to watch his physical pain and my mother’s mental distress – she’s floundering without him and I think what’s hitting her hard is how much she relies on him. Part of what I’m trying to do is to get her thinking about how she’ll manage her routine if something happens.