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Starting Over

MessagesIt’s two weeks today since my beautiful Girl passed away. I wish I could say it seems longer, but it doesn’t. Time that seemed to stretch on forever is now compressed into tiny blocks barely visible in the rear-view mirror. And a strange phenomenon has occurred.

I’m living in two worlds.

I can’t say when I first noticed it. My heart broke when my Girl left me, and the pieces now seem to inhabit two entirely different realities.

The first is a world in which my Girl is still with me. I call her name, talk to her, put her music on for her. In this world, my Girl is at her program, laughing and singing and dancing with her friends. She’s in her room watching her Smurfs DVDs, sorting through her CDs, or playing her games. Alternately, I tell myself that her absence is explained by a spell of respite at the hospice. It’s an oddly comforting world that’s all inclusive, that contains all the memories, all the past, all the fun, the laughter, and the togetherness that we had. In this world, she’s still my best friend. She still holds my hand. She’s still the beautiful person I care for, look out for, fight for; the person I nurture and love. And it doesn’t matter that I can’t see her because somewhere, just around the next corner, I’ll find her waiting for me.

But living in this world has isn’t sustainable. While the music plays and I revel in the familiarity, I know the slightest ripple in the facade will break the spell. When that happens, reality kicks in.

Then I’m thrown into that other world. This one is a world of hard surfaces and sharp corners and sudden aches that fill my chest and reduce me to a howling, sobbing wreck. It’s a world where I cannot contain the pain inside. It’s the world where I said goodbye, and now there’s a space my beautiful Girl once occupied. That space is cold and empty. It has no air, creates no shadow. It’s space unfilled.

This weird double existence seems to have developed since the funeral. I went through the entire service, making arrangements, having the casket sent to her program for her friends to decorate under the guidance of her beloved art teacher. All the while I was busy organizing flowers, selecting music. I knew two of the songs that would speak volumes about the incredible person my Girl was, and the amazing relationship we had. I could not find the third. It had to be big. It had to be touching. It had to be right.

Time went, and I began to panic. My Girl had a personality ten times her physical size, so I knew it had to fill the room. I wanted something that spoke about the suffering she had left behind, about the journey she was always going to make. I spent months—eighteen months, to be exact—searching for the perfect song. The day before the service, I was at my wit’s-end. I had already decided on something only halfway good enough, when I found myself on the phone on hold, waiting to cancel my welfare payment, when the opening bars to New Zealand singer Hollie Smith’s “Bathe in the River” rang down the line. It was perfect!

It was music that would take her from us for the last time, music I would remember her by. It was music that spoke of a dignified and peaceful passing.

We gathered at my home to  drink and eat and talk about a wonderful young woman we’d been so privileged to know. I thought it gave me closure. I thought it brought me peace.

My darling friend Rachel stayed that first night. We sat up talking, laughing, and remembering.

But somewhere in the back of my mind, I was worried. Where was this great sorrow I was supposed to be experiencing? Was there something wrong with me? Had I suddenly become heartless? Or was it that I’d been grieving for so long, I was moving through the process more smoothly than I’d anticipated?

I felt robbed.

Until the next day.

That’s when World Number Two made its presence felt.

After a leisurely breakfast and a promise of many phone calls, Rachel packed up her things and deposited them at the door while we said our goodbyes. I meant to say goodbye. I really did. But the instant she lifted her bags, all the air in the house seemed to be sucked out of that open door. I couldn’t breathe. My Girl’s absence filled the house with a feeling of despair and absolute loss. An implosion in my chest folded me in two, wailing like something deeply wounded. I begged Rachel not to go.

She grabbed me, hugged me tight, then immediately unpacked. After another night of talking and remembering, we once again said our goodbyes. This time, she had to go. This time I let her.

So this is my world now. The house is quiet, my days stretch out empty in front of me. I still get up at 5 a.m. Maybe one day I’ll sleep until 6 a.m.

I have no idea what the future holds. It’s as though my purpose in life has been stolen away from me. But when I look back from this point in time, my Girl had been slipping from my grasp so slowly and for so long, I had barely noticed. What I had left was her body, racked with pain, only containing a tiny flickering light.

Gone was her amazing strength of spirit. Gone were the laughter and the twinkle in her eye. Illness had crept in while I wasn’t looking and stolen away her vitality, her essence, her radiance. Our beautiful life together was just a memory. I’d left it further back on the road without noticing. I’d been so busy keeping her alive, keeping her comfortable, I forgot to be happy. And no matter how hard I worked, how many drugs I administered, how hard I prayed, I knew she would one day leave. I never let that knowledge stand in my way.

Looking back, there were times when I prayed it would all end. There were moments when I looked to the day when we were no longer on this rollercoaster ride—not because I wanted her gone—oh, dear God, nothing could be further from the truth. I wanted to keep her with all my heart. But in reality, all I had left was a shell with that faint spark still sputtering on. It was no life for her. It was no life for me. I wanted the pain, the suffering, the hopelessness to be over. That came at a price. My Girl and her suffering went hand in hand. If I lost one, I lost the other. It was the worst no-win situation.

Perhaps one day the two halves of my world will merge. Perhaps I’ll inhabit a world where my Girl may be gone, but she’ll always be with me. It’ll be a time and place where I can see the little everyday things that were once a part of our everyday lives and I won’t fall apart. I’ll be able to hear her songs, and not feel the ache; I’ll touch her clothes and not feel that desperate yearning to roll back time and find her again.

I know the pain will be with me forever. I’ll learn to place it into a box. Every now and then, I’ll lift the lid and take out that pain. My heart will ache every bit as much as the day I lost her. But then I’ll place all that pain, all those memories back in the box, and my other world will take me onwards.

I know I’ll never be alone. I know that wherever I go, she’ll be with me, and that one day, we will meet again.

I’ve learned so much on this journey. I’ve learned to love, to laugh, to fight when I need to. I’ve learned that I can make my voice heard and that I can move mountains. I learned this when she was alive. I’ll keep it with me always.

Who could ever ask for more?

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One Last Breath

That's My GirlOne Last Breath is the old Creed song. It seems so appropriate right now because the inevitable has finally caught up with us. A long period of relentless monotony has given way to a new phase in my Girl’s journey. It was always coming. It was never going to be good.

Three weeks ago now, she began bloating up again. I wasn’t overly worried. It’s happened before. A little constipation here, a little gas there, lying around in bed—well, the result seems almost obvious.

As usual, I threw myself into the old routine, packing her with laxatives, giving her plenty to drink, administering all the correct medications, and carrying out all the appropriate procedures.

This time, after firing the entire arsenal at her, the situation remained unchanged.

In desperation, I searched through all my cases and boxes of medical equipment, and found a lab test form I hadn’t used. I took samples and sent them away for analysis, just in case something unexpected was brewing. The results came back a big fat zero—nothing sinister, nothing threatening.

When one of the hospice nurses paid us a visit I explained our dilemma. Her advice was to take my Girl to the hospital, let them figure out what was wrong and get it treated.

Now, let me just reiterate that long ago I came to the difficult decision not to put my Girl through a battery of unnecessary procedures and stays in hospital if it could be avoided. She hates the hospital, and only wants to be at home. She wants her music, her Smurfs and her surroundings. And yes, she wants to be with me. But her comfort has always been at the top of my list of priorities, so reluctantly, I agreed, and called an ambulance.

We arrived at Accident and Emergency with the usual fanfare—nurses recognising us, chatting about past visits and what’s brought us in today. I tell them it’s the same old story but I’m out of my depth and need the heavy firepower. They book her in and she’s immediately tended to by the doctor before being bedded down in ADU, the diagnostic unit.

Doctors come, doctors go. They make notes and tisk. I tell each of them in turn that my Girl is probably constipated, that I’d done everything I could but I suspect there could be something else going on. There are muffled consultations with specialists and registrars, murmurs of the dreaded “abdominal fluid.”

I’m desperately resisting the urge to groan aloud. I’ve been down this road so many times I own real estate in the downtown area. And so it goes:

The Emergency doctor tells me the bloating is probably fluid. It’s what happens when the liver is failing. It’s called Ascites. The cells in the liver don’t have enough protein and so they leak. The resultant fluid fills the peritoneal cavity and bloats the abdomen, causing pressure on the organs.

I suppress an audible sigh and tell him, Yes, yes, I know all about this, that this has happened more times than I can count, and that, Yes, if he wants to order a scan, he’ll find there’s a little fluid but not much, and there’s a whole wad of gas he’s ignoring but I understand he has his procedures so we may as well get on with it.

He tells me the significance of ascites. I nod and tell him it’s gas. He tells me they can drain the fluid but it comes back even more quickly. I tell him that so does the gas. He’s not listening. He tells me they need to find out how much fluid there is. I heave out a frustrated breath and tell him I’m her mother, I know what’s going on and if they’d just listen to me and address the cause of the constipation and the gas, they could get to the actual problem instead of getting sidetracked with the prospect of Ascites. Then we can address her discomfort, and get back home where we should be.

I can’t count how many times we’ve done this. It’s like we’re having two different conversations. Or maybe it’s like I’m speaking a different language, and while they’re polite and displaying an understanding of my predicament, they’re not hearing me.

But when the scan results come back, something’s changed. They show a large quantity of fluid in her abdomen.

I’m shocked.

Despite the fact that I probably already know, I ask the doctors what this means, just in case I’ve got it wrong. Just in case there’s a positive spin I hadn’t heard about. They tell me that they can drain the fluid, that it’s not uncommon, but it’s not a good sign. The fluid comes back, sometimes twice as fast. It crushes the organs, presses on the diaphragm and limits lung capacity.

What can I do? Leave it? Hardly.

I agree to have the fluid drained. But there’s no ying without yang. For every action, there’s an equal and opposite reaction. I’ve done enough physics and cared for my girl long enough to know what that means—taking that much fluid means the protein is depleted. She’ll have to have an IV line in so they can administer replacement protein.

And here we go again. We’re hurtling towards exactly the ending I’d vowed to avoid: My Girl’s life ending in a series of procedures under harsh hospital lights, with doctors and nurses and noise and discomfort.

I ask for our beloved palliative doctor. It turns out she’s moved on. Wendy, the Palliative nurse arrives. She’s Scottish and I doubt she’ll mind my mentioning her because she’s EXACTLY what I need. She’s straight-talking, honest and fabulously supportive. I ask her how long my girl has. She tells me if it was anyone else, she’d say days. But she knows what a fighter we’ve got here. We talk about options. There are two. Neither end well. She contacts the Hospice and of the twelve beds in the entire place, they’ve made one available. It’s immediately booked.

By the end of the day I’m exhausted. I’m about to go home when the young registrar appears. He tells me there’s more they can do, that he feels we’re giving up too quickly. I tell him this has been a long day after a long battle. I tell him I don’t want her put through exhaustive procedures to no avail. He says my girl has a urinary infection and a suspected lung infection. I know he means well, but the question is: What is the objective here? Keeping her alive? Or keeping her comfortable?

He tells me that the infections mean she’ll be in discomfort. If she stayed just for the weekend, they could treat her, bring her comfort. I can’t get hold of my doctor, or the hospice nurses, and Wendy’s gone home. My resistance is two feet below ground level, so I relent.

By the time I’m halfway home, I’m furious with myself. I’ve just gone against everything I promised my girl. She’s where she doesn’t want to be. She’s in pain and away from her home. The instant I get in the door, I call the hospice. The bed is still available. I tell them to keep it. Next I call the hospital, and speak to the ward nurse. I tell her I’m coming first thing in the morning and I’m taking my girl to the hospice, and that I’m not taking NO for an answer. I tell them she doesn’t want to be in a hospital, that she’ll be frightened, that she wants her mum. By the time I’m done blubbering down the phone, and begging them to take the very best care of her, the nurse has noted down my request and alerted the doctors.

Don’t worry, Baby, I’m coming to get you.

Stay tuned. There’s more to come.

 

 

 

 

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Across the Universe…

Flight Officer LeaCaptain’s Log—Stardate May 29, 2014

We have entered an unremarkable star system, on a routine mission to map new territory. After diagnosing and treating a new urinary infection in the lower decks, we have been drifting through space without further orders, and without incident for a total of nine days now.

Communications with earth are few and sporadic. I have issued orders that the telecommunications be regularly checked. I cannot allow the ship to fall into disrepair during these periods of inactivity.

Yesterday an ambassador of Starfleet’s Hospice administration made the journey out to see us. Under their advice, Hospice has provided us with an additional crew member. Flight Officer Phillips is tasked with taking the helm of the Enterprise for up to two hours per week while I carry out supplemental duties. Although my initial reaction was to refuse the offer, already I feel the benefit of the extra crew member. Yesterday I journeyed out onto the planet surface for supplies. Indeed, it is a strange world. The winter sun in this part of the galaxy is bright, the air cold. I departed in my shuttlecraft, the Honda Nostromo, at precisely 11:00 hours and under constraints of time and outside air temperatures, I completed two stops—one to collect local flora that we may replenish our food stocks , the other to collect corrective glasses for reading. Who knew there would be a SpecSavers this far out in space?

Back on board the Enterprise, however, I have grave fears for the mental wellbeing of the crew. Past experience has proven that long periods of inactivity and zero stimulation have resulted in outbreaks of insubordination among the flight officers, resulting in skirmishes among the ranks. I have therefore placed all hands on maintenance duties. Following a schedule drawn up by Scotty and myself, the ship will be systematically cleaned and overhauled during the coming weeks. Cupboards will be cleared, bathrooms scrubbed. After an initial inspection of the flight dock and cargo hold, I expect reorganization of the general stores there within to take several days to complete, if not weeks. How we have accumulated so much space junk is anyone’s guess. Reinforcements to clear the docks may be necessary. In the meantime, I have issued orders for crew quarters to undergo weekly maintenance, commencing today.

After a low level encounter with the Klingon ship, The Department of Inland Revenue, several days past, I have ordered that while the Enterprise remains in stasis, the shields are to remain up. My past experience with this species has taught me that while we must treat them with respect, they are not to be trusted. I have seen swift and bloody retribution handed out by these fiends when provoked. Since our initial encounter, we have seen no further sign of them. It has been several days, now. This gives me no peace. I know that that they will come. When they do, it will be with demands for reparation for any profiteering we may have carried out during mining activities in this sector. My instinct as a Starfleet Captain tells me to fight. For the safety and wellbeing of my crew, I have no choice but to pay their demands, and trust they leave us in peace.

Of all our challenges on this mission, however, my greatest comes from these long periods between missions. I fear they have rendered the crew open to psychological degradation. Already there are signs of delusional behaviour. Crew members are losing sight of reality—playing out the roles of their favourite television and movie characters, and falling into unusual speech patterns. Only yesterday I found my trusted ensign, The Girl, asleep at her post, a Playstation controller inert on her lap. Two nights ago, I awoke to an eerie blue light emanating from The Girl’s quarters. It transpired that during her night-time vigil, Scotty had mistaken The Girl’s request for “Smoothies” and activated the ship’s secondary television console for a night-time screening of “The Smurfs.” Are my efforts to curb mental stagnation among those in under my command too little, too late?

Only time will tell.

Signing off. Ship’s Captain—Catherine Lea.

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The Luckiest Person I Know

Just Smurfing Back Spoiler Alert!

The luckiest person I know – is me.

That’s right. When I tell people that I’m the luckiest person I know, they look at me as if I’m nuts. Maybe I am. But lately, I just keep hearing myself muttering, “Oh. My. God. I am the luckiest person I know.”

I told a someone that just yesterday. A clanging silence hung between us, then she said, “Weeeellll, yes, I suppose you could see it that way.”

Yes, I do see it that way. Let me count the ways … or at least bullet point them:

• I’m the mother of a beautiful but severely disabled girl who has taught me more lessons than you’d ever pay for. She’s funny, she’s bright, and she’s one of my best friends.

• I receive an income from the New Zealand government so I can care for my girl. Okay, so it’s not a fortune. I will not grow rich on it. But it gives me the opportunity to stay home and give my girl the quality of care she needs and deserves. It also gives me the opportunity to write while I’m doing it. I couldn’t ask for more.

• I have my own home. Yes, I worked for it. Yes, I went without to get it. Yes, there were those who thought anyone on my pathetically low income that set out to build a new home, was completely certifiable. But I did it for my girl. She’s the one that gave me the courage and the determination to keep going. If it wasn’t for her, I’d never have gotten to where I have. And there are those out there who have worked, and gone without, and still don’t have what I have.

• I have the most amazing, supportive friends. When my girl went into the Emergency this week, my fabulous friend, Marg, came to the hospital and sat for seven of the eight hours with me in the Resus Room. Then she took me home afterwards. We forwent the McDonald’s on the way because we were both too tired. That was probably also a blessing.

• I have neighbours that I can call on. My wonderful neighbour will pick up supplies for me, let the dog out when I can’t, cook a meal for me when I’m snowed, and pick up a DVD for me while they’re out. How amazing is that?

• I have in-home support. For three nights a week, I have someone come and sit over so I can sleep. It’s a service that’s supplied by the New Zealand Health Board. I’m more grateful for that than I can say.

• I’ve “met” the most supportive, sympathetic, knowledgeable, and generous group of people in BACKSPACE, an online writers’ group. I’ve made friends there, gotten advice you couldn’t find anywhere else, found help and encouragement when I needed it most.

• It was through BACKSPACE I found the amazing, wonderful, generous, Sara J. Henry. Sara is the multi-award-winning author of A COLD AND LONELY PLACE, and the stunning, LEARNING TO SWIM. It was Sara who took me under her wing, read THE CANDIDATE’S DAUGHTER over and over until her eyes bled, edited, nurtured, and cheered me on. When the book went up on Amazon, Sara was there. She threw her support behind me, opening doors, and recommending my book to her audience. You rarely find a more sincere heart. One day I will meet her. That day I will tell her how much her help meant to me. In the meantime, I shout her praises wherever I can.

• I have a fantastic group of writing buddies. One of my best friends is a terrific writer, an ER doctor, my go-to girl. It helps that she has a terrific sense of humour. She makes me laugh, she makes me work, and she manages to come up with the most fantastic ills and cures for my characters.

• My book, THE CANDIDATE’S DAUGHTER, is being read, and enjoyed, by people all around the world. It’s getting reviews that make me smile from ear to ear. I now have a second book about to go live titled, THE CONTESTANT. After that I start the sequel to THE CANDIDATE’S DAUGHTER. I get to choose what I write, and market my work on the world stage. Twelve years ago when I began writing, this would never have happened. I’m so blessed.

• I have the most incredible support from the Hospice. Only yesterday, my girl’s breathing became laboured. Her chest sounded like she was drowning. I called, the hospice nurse came. They give me support, advice, after-hours medical care, and respite. I don’t know what I’d do without them.

• My girl’s daily program, Creative Abilities, is the result of visionary Liz Soper’s desire to create a program for intellectually disabled adults, to provide a place where they find self-esteem, support, friendship, respect, and a special place in this world. Creative Abilities is staffed by the most talented, caring, and compassionate people you could meet. Every day I tell myself how lucky we were to find them.

These are only a few of the blessings I count every day.

Do I have bad days? Of course I do. There are days I really wonder how I’m going to get through.

Do I get down, angry, frustrated? If I didn’t, I really would be nuts.

But once I’ve had a grizzle and a gripe, I’ve learnt to quickly turn myself around, find the good in my day, and carry on. I’ve learnt that one bad day doesn’t make a bad life. I’ve learnt that no problem is insurmountable, that even if the outcome isn’t what I wanted, it’s what I can cope with. I’ve learnt that tomorrow, the sun will surely rise, and a new day will begin.

And that I’m the luckiest person I know.

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Slap On Your Warpaint – We Got Us a Battle

Beach 007Picked my Girl up from the hospice yesterday. Got home. Dredged out my war paint. Slapped a load on, gathered up my ammo, went on the war-path. Someone was going to pay, and they’d pay dear.

Let me back up a bit, give you the backstory.

Then let me tell you why, after all the hoopla, I did nothing.

My Girl isn’t so good. You probably know that by now. But lately she’s really been ramping down. So when I was offered a week’s respite by the hospice, even though we weren’t due, I grabbed it. I have no idea how long this will go on. Whatever date that sunset has stamped on it, I have to keep going.

At ten-thirty yesterday morning, I jump in the car, pick up a few groceries on the way, then drive straight to the hospice to fetch my Girl. She’s been there a whole week. It feels like a year. It also feels like ten minutes. This has been a long, tiring journey. For both of us. I can’t wait to see her. I’ve also been dreading it because I’m back in full-care-mode. But that’s all okay.

Until I walk into the room, that is.

She’s lying there with her hair in the pretty pink clips I got her. But she’s not my Girl. Her cheeks are hollow, her hair is sparse. It’s as though someone has sneaked in while I wasn’t there, and stolen my beautiful Girl. All I have left is a hollowed-out shell. I’m shaken.

The nurse doesn’t seem to notice the iced-over expression on my face. Instead of making a scene, I swallow back the tears, stiffen my upper lip, and say nothing.

All my Girl’s bags are packed, her meds are ready and she’s set to come home. The nurse tells me she’s been eating well, she’s been chatting, although they did notice that when they showered her first thing, clumps of her hair were falling out.

I don’t need her to tell me that clumps of hair are falling out. I can see her scalp through the strands.

When I fold back the covers, her stomach is distended again. “Yes,” the nurse tells me, “she seems to be bloating up again.”

“Maybe she’s been overeating,” I tell her pointedly. “If it’s there, she’ll just keep eating.”

The nurse doesn’t seem to have spotted the tension in my voice. She happily goes on to tell me that, no, she didn’t have big meals, but her blood sugars are soaring, and that could be due to the infection in her shoulder from the syringe pump needle.

“A shoulder infection?”

That’s right. She now has a very nasty infection from the needle site.

“Oh! Right. Of course. Why didn’t I expect that?”

The nurse doesn’t seem to notice the stinging sarcasm that’s leeched into my tone. I’m obviously too nice. (Maybe I could use anger management lessons, the ones where I manage to get angry so people know about it.)

“The shoulder looks really nasty,” the nurse tells me as she pops the meds into the bag, “but the doctors are hoping the antibiotics we’ve been treating the urinary tract infection will help clear it up.

“Oh, you’re hoping? Well, that’s good.”

Okay, so let me get this straight—I sent you my beautiful Girl who was chatty and sweet, with manageable bloods sugars, perfect skin, and a headful of silky soft hair, and after a week with you, she has a shoulder infection which, from what you’ve described, I might not want to check out while I’m sober, she has a UTI, and her bloods are screamingly high. Oh, yes, I almost forgot—and her hair’s falling out.

Yep, that’s about the size of it.

I pack her up, keep my gob shut tight. I have to go home, plan and execute the perfect response. Someone will hear about this. And they will hear in bold, anger-managed terms.

When I get her home, the wound on her shoulder is oozing. I still don’t look at it. What’s the point? I’m giving her antibiotics. I can’t do anything else. With the help of one of my *Ladies-of-the-Morning, I get my Girl into bed—ensuring there’s no pressure on the shoulder—I change her diaper, and give her a drink.
Next I call the first of my “outraged and indignant” supporters. I tell him the tale. I go into detail about the UTI, the shoulder, the hollowed-out cheeks, the blood sugars. I tell him I’m outraged. I suspect he guessed.

“Bloody hell!” he says. “What did they do to her? How could they send her home that way?”

I knew it! I knew I was right to be outraged and indignant. But I’ve still got a seed of doubt fluttering about in my brain. The remaining members of my “outraged supporters” are absent, so I call my counsellor. I tell her. I get into detail on the UTI, the shoulder, the…oh, you know, the whole lot. I elaborate on my outrage, then burst into tears. Because I can.

There’s a moment’s silence on the line. I don’t feel a bout of outraged indignation coming my way. I’m beginning to think she’s not on my side, that she’s siding with the hospice. Instead, she tells me the truth.

The Truth:

My girl is not getting better. She’s not going to get better. She will get worse.

My girl’s immune system is so weak, that anything, anything can be the difference between her life and her death. An unthinking visitor with a simple sniffle could kill her. People who are dying lose the ability to fight the slightest health issues we take for granted. For the terminally ill at end-of-life, we have to accept some facts:

There is no fix.

Bed-sores don’t heal.

Wound sites from operations get worse.

Hair falls out.

Infections happen no matter where the patient is—home, hospital, wherever.

Sometimes, not getting better is the best you get.

We live in a society where we expect medication to fix things, make illness go away. We watch movies where families sit around watching on as the loved one slips comfortably away with a simpering smile on her lips. Don’t believe me? Watch My Sister’s Keeper, then ask a hospice nurse to tell you how close to reality that is.

Reality is a loved one who dies long after everything has been stripped away. Reality is being an on-the-job-trained carer managing bowel movements, and open wounds that ooze pus and blood alternately. Reality is the loved one passing away in that very moment the loving and constantly-attendant carer nips out to the toilet, only to return to find their loved one, deceased and covered in vomit or blood or feces, and that’s the image they’re left with, along with the cleanup.

We’re not a society that learns about the reality of death. We don’t like to know. For the staff of a hospice, it’s real, and all of the above happens. They go to extreme lengths to retain a patient’s dignity, to keep them comfortable, to allow them to pass without pain. Doesn’t always happen. But hospice staff don’t sign on for the money and the perks.

Turns out that while my Girl was in the hospice, that infection was spotted the instant it arose. They checked it four-hourly, had two doctors attend to it, they changed the site of the needle, checked her blood sugars, fed her, showered her, kept her dignity.

Yes, I was right to be outraged. It’s my job.

But sometimes my job simply isn’t enough.

*Please note that while I’m privileged to have care workers who come in the mornings, they are euphemistically referred to in our house as our Ladies-of-the-Morning. Conversely, the night-watch are our Ladies-of-the-Night. Not to be confused with the “other” Ladies-of-the-Night. Just in case you…wondered.

**Also note, the headful of silky hair was probably less than a headful…Okay, was definitley way less than. Emotive language in use here.

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There Is Such A Thing as Trying Too Hard

My GirlThis morning the sun came out. We’ve had a lousy summer so far—rain, wind, more rain. And the girl keeps tracking in a downward direction. Last night didn’t help. This morning I called Chookie Lou. I told her about last night; told her I’m the worst mother on the planet and that I shouldn’t be left in care of myself, let alone someone else. I told her I was going to blog about it.

“I wouldn’t,” she said.

I considered her response. “Why not?” I asked. “I want to give readers a true account of what it’s like caring for a terminally ill loved one. This is a perfect example of what can happen.”

“Blog that,” she replied, “and Social Services will be at your door before you can blink. They’ll use your blog as evidence and they’ll take her away.”

“Good,” I said. “Tell them to call first. I can have her packed in less than ten minutes.”

The previous night’s trauma began with a typically mundane day. The Girl had lain in her bed, sleeping off and on throughout the afternoon while an endless stream of Smurfs played out on her TV. Meanwhile, I caught up on my blogging, surfed the internet, made dinner, wondered what other people who aren’t me were doing.

That’s okay. That’s what I signed up for. I accept it. I even blog about it.

So why on earth, you may ask, could things go disastrously awry?

Like this:
Liver disease is a funny thing—okay, so not so much funny, as peculiar. The liver is one of the most amazing organs in the body. It removes toxins from the blood, distributes glucose, keeps everything ticking over. A little like your local water treatment plant. But I won’t bore you with an anatomy lesson. Just know that when it begins breaking down, it tends to do weird things. If pressure builds up on the portal vein, blood gets re-routed and turns up in interesting places like the oesophagus, where it bursts through into the digestive system and results in projectile vomiting in great, bright red spouts. We know all about that. It happened to the girl a couple of years ago. Color me surprised when the doctor told me what was happening.

When it’s out of whack, the liver sometimes throws hissy fits and decides to dump all the glucose it’s lovingly collected during the day. You wind up with blood sugars of a million in the middle of the night, and by morning you’re hypoglycaemic. Imagine how that affects the typical diabetic.

But that’s not all. When toxins rise in the blood, sufferers tend to feel disorientated, delirious, spaced out. Body clocks go haywire and next thing you know, you’re awake all night and asleep all day. Not good for the sole carer.

You can also imagine, therefore, how important it is to get rid of these toxins. The best way to do that, is … well, let’s just say via the digestive system. Perhaps, with my sketchy outline of resultant problems above, you can see why hydration is so important. It all goes hand in hand.

So when the Girl had slept for the previous three days, I became worried. And ignored my own better judgement.

At 5 p.m. she ate dinner. Slowly. I had made her scrambled eggs and chopped in some cherry tomatoes from the permaculture in the back yard. Unfortunately, she refused to drink. I came back several times with water, then juice, then a milk shake. Still she refused, and the above effects started looping through my brain. What if? What if?

Now, most people in this situation would simply think, “Easy. If it gets too hard I’ll call an ambulance.” But I can’t. If I send her to hospital, they’ll try to fix her. That’s their job. That’s why I busted her out the last time. If she goes anywhere from here, it’s the hospice. So it’s up to me to manage her illness. Which is what makes what I did next so dumb.

By 9 p.m. I was ready to go to bed. I had no one coming in to sit over so I could sleep—won’t have for the next four nights. So I must prepare. I can’t have the Girl singing and whooping half the night. So just before bed, I took her in a drink of juice. I sat her upright, put the straw to her lips.

She took one sip, then two …

… then choked. Yes, choked!

It’s called aspiration. It’s when fluid goes into the lungs. Most of us can cope. People with serious illnesses can’t. Fluid in the lungs causes pneumonia.

HOW COULD I BE SO STUPID?

This instant the juice hits home, it turns to foam. I can hear the wheezing and bubbling every time she coughs. Her lungs sound like a sponge with too much detergent soaked through it. I sit her up, push her forward, and slap her on the back. It doesn’t help. She’s still wheezing and coughing. Her face is scarlet and she’s wringing herself out. I incline the bed, roll her over, rub her back and call the hospice.

The night nurse tells me to give her more sedation. I tell her I need Buscopan. She tells me that doesn’t always work. Dear God, the things you learn. She tells me to administer a sub-cut—an extra dose of pain medication. I dig it out, inject it into her line, wait fifteen minutes. Finally, thankfully, the coughing slows, she settles. It’s now after ten. I’m exhausted.

Once she’s asleep, I say a little prayer of thanks, switch off all the lights, and go to bed.

This morning the Girl awakens. I can hear her chuckling. My relief is overwhelming. I cannot imagine how I’d feel if she died by my own stupidity. I know there’ll be a next time. But next time I’ll take my own advice. Next time, I’ll try to stand back, let things run their natural course. If that fails, then next time I won’t beat myself up. Next time, I’ll still blog about it, because this is what happens. And frankly, if it happens again, and Social Services call, I’ll tell them she’s packed and already to go.

They’d bring her back in two minutes flat.

I should also mention here than any references to Social Services were made in jest, and after the fact, and therefore, may not be held against us. Just in case you were wondering.

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And So This Is Hospital …

My Baby Girl

My Baby Girl


I began writing this a few days ago. I didn’t finish. I needed to.

So here it is …

Thursday, I busted my Girl out of hospital. It was a raid worthy of a crack military team. Okay, maybe not that worthy, but it was close.

She was in there because her blood sugars had been hovering at a staggering 30 mmol/l. In the American system that’s 540 mg/dl. In any system, that’s ridiculous.

The doctors immediately put her on an insulin drip and put her on a ward.

Now, let me paint you a picture. Hospitals are the places you go to get better. They are not the places you go to get comfortable. They are not places of peace. Now that I’ve got that out there, you’ll begin to understand where I’m coming from on this.

My Girl starts out in Observation. They need to get a grip on her blood sugars then transfer her to a ward. I wait with her for four hours. At 5:30 p.m. I reluctantly leave.

I return on Day Two to find her in a ward. She’s sharing a room with three others. All women. All over 80 years in age—a couple maybe over 90. I suspect my Girl is in this particular room because it offers her some company. Although not from the old dear opposite in Bed 1. She mostly sleeps. Every now and then she lets out a wail. It’s disconcerting. I want to nip across and comfort her. I’d probably make things worse.

I’m just getting settled, comforting my Girl, when a nurse sweeps in. The old dear diagonally opposite in Bed 2 informs the nurse she’s going home today. The nurse tells her gently that she’s not going home, that’s she’s staying in the hospital, and then sweeps out. Next to us, the third old dear in Bed 3 gets up and paddles off out of the room. The nurse sweeps back in. Bed 2 tells her she’s going home today and Bed 1 wails in pain. The nurse administers medication to Bed 1 and tells Bed 2 she’s not going home. Bed 3 paddles back into the room to advise the nurse of the horror she’s just discovered—the doors are locked and she can’t get out. The nurse gently guides her back to her bed, telling her not to worry and that she’ll check the door.

She prepares to sweep out again, and checks my girl’s blood sugars. They’re still raging. Bed 3 gets up and paddles off down the corridor again. The nurse tells me the doors are locked, even at visiting time because if they weren’t, they’d lose 75% of their patients within the first five minutes.

I sit with my Girl for a total of five hours. Over this time, the scene above is played out over and over. The Girl’s blood sugars persist in the late 30’s. By the end of the day, Bed 3 is still paddling around and around, Bed 1 is sleeping and wailing, Bed 2 can’t understand why she isn’t at home. I’m exhausted, my Girl is sleeping, so I leave.

On Day Three I catch the doctors doing their rounds. Amongst them is the liver specialist. He tells me nothing I don’t already know. He tells me the girl’s insulin-resistance is puzzling.

Really? I mean, Really?

I request the palliative team’s involvement and settle back to my vigil. My Girl is mostly sleeping and I have so much to catch up on back home. The washing has piled up, the floors need cleaning, the dog has forgotten who I am. I kiss my Girl and head home.

On Day Four I sit with my Girl for another five hours. I bring my own lunch but it’s costing me a fortune in parking. I request some kind of parking concession since I’m here feeding, washing, toileting my Girl. The nursing staff put in a request. They advise me it takes at least 24 hours.

On Day Five, I arrive at the hospital. I cannot say how sick I am of hospitals. I hit the door bell. As the doors swing open, I walk in passing Bed 3 who’s walking out. At the nurses’ station, I report another attempted escape. They dispatch two nurses to retrieve Bed 3 and catch her at the stairs. She’s gently guided back to the room.

When I get there, my Girl is gone.

My first reaction is panic. Then I realize they would have informed me if something dire had happened. I’m told she’s had a restless night and she’s been moved to another room.

There’s good news, and bad. My Girl’s blood sugars have dropped. I’m ecstatic! They’re down to a sensible 9.2.

But now her abdomen is distended from sitting in a bed all this time. She’s retaining water and she’s in pain. The doctors are doing tests. They’ll get to the bottom of it. That’s their job. They test her blood, her urine, her stools. They put her through an x-ray, a CT scan, an ultrasound. They’ve already put her through every test known to man, and I suspect they’ll put her through a car-wash next.

Now she looks even sicker than she was when she went in. Her face is puffy, her stomach swollen. I go home depressed and feeling as though I’ve let her down.

I lie in bed that night, worrying. All I can see is her face. She’s in pain, she’s unhappy. Then the thought hits me—she has to come home. I don’t care if I have to fight them. I’ll take all responsibility. My Girl doesn’t want to be in the hospital. She wants to be home with Boo Boo her bunny, and Lilly Lion, and Dead Cat. She wants to be in her room, in her bed with her toys and her Smurfs and her music. She needs to be at home with her mummy.

The next morning I call and speak to her nurse on duty. I tell her I’m coming to get my Girl. The nurse says she’ll have to tell the consultant. I tell her that’s fine, tell whoever, but I’m taking my girl home.

As soon as I’m dressed and ready, I storm in there. The door opens and I burst in, passing Bed 3 who’s on her way out. I inform the nurse that Bed 3 has escaped and demand to see the consultant. I’m told that the parking concession has arrived, but it’s can’t be applied retrospectively. I say I don’t care, I won’t need it. I’m taking my Girl home.

Then the consultant appears. I’m ready for a fight. I know my rights. I’m prepared to thump my fist on the desk and demand my Girl’s release. But the consultant is in the process of completing the discharge papers. She tells me she thinks it’s the right decision. The charge nurse appears, telling me she agrees. We order an ambulance, and pack the girl’s belongings.

She’s coming home. She’s coming home and I couldn’t be happier.

Yes, it’ll be tough. Yes, it’ll be terrifying. But it’s all about quality of life.

So here are a few rules I picked up along the way:

1. Do not ask the doctors if there’s anything else they can do. They’ll find something.
2. Sometimes, one more test is one test too many.
3. If you are the main caregiver for a terminally ill person, it doesn’t matter if you don’t have a title or initials around your name or a plaque on the wall, you probably know more than about your terminally ill loved one than anyone else.
4. There is no cure—there’s only comfort.
5. It really is about quality of life.
6. And finally, there is nothing more important than being surrounded by love, good intentions, and home.

In my next blog I’ll address caring for the terminally ill at home. It’s more incredible, more frightening, more fulfilling, and sometimes more hilarious than you could ever guess …

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More Stress, Anyone?

The Candidate's DaughterI have a nightmare.

I’m sitting at the Antiques Roadshow and in my hand, I have a small vase. The vase is narrow, with two tiny handles on the sides, and a hallmark underneath that I suspect means it’s worth something.

I’m horribly nervous. The more nervous I get, the more I fidget. Finally, the vase expert is almost ready to see me. He tells me he’ll be over shortly. I’m picking up the vase, wondering at its value. I’m turning it, turning it until…

… one of the little handles snaps off.

I’m horrified. I dig a tube of superglue out of my bag and carefully glue the handle back on. I’m devastated because it’ll have lost value, but hopefully not too much. After all, it has those hallmarks. That means it could still have some value. Again, I pick up the vase to check them. But in doing so, the lip of the vase hits the table and a tiny chip flakes off.

Dammit!

Again, I’m out with the superglue. I carefully glue the chip back into place and set the vase on the table. I must not touch the damn thing again. I reach across, just to position it once more, to find that a drop of glue has found its way onto the table and the vase is stuck fast. I wriggle it, tug it, then wrench it loose. Suddenly, the top of the vase is in my hand but the base is still stuck to the table.

That’s the nightmare. But it feels like it’s coming true. And it’s all down to my current stress levels.

Let me explain.

We haven’t been sleeping. The Girl has had entire nights without sleep. That goes for me, too. The dog has also complained, but I figure he can sleep at any other time and still refuses to help out with the housework, so he doesn’t really count.

I took the Girl to the dentist. I knew she had an enormous cavity, but now we’re worried it’ll abscess and we’ll be in emergency territory, so it’s time to do something about it. I have an appointment with the hospital dental department next Tuesday. On Wednesday I’m taking my mother to her eye specialist for her glaucoma. On the same day I have an appointment with my counselor (thank God). Later in the week I have appointments with the Girl’s liver specialist and the diabetes clinic.

So what better time to organize a promotion on my book, The Candidate’s Daughter.

That’s right, there’s a new promotional opportunity in town. It’s called the Kindle Countdown and it gives me the opportunity to discount my book in the US and the UK, and drive myself completely around the twist at the same time.

So I book the promotion in my Amazon page, selecting dates in the third week of November, then book and pay for four advertising slots with various advertisers. I also submit the details to a top advertising organization called Bookbub. Now, if you want results, Bookbub is the place to go. Submitting to them is like sitting at the Antiques Roadshow with that vase in your hand. Having Bookbub select a book for advertising is the equivalent of having the vase expert indicate that he’s on his way over.

And the nightmare begins.

Bookbub send me an email to say they’ve accepted the book, but not for the dates I wanted. They are the pinnacle of e-book advertising. I’ve heard of books reaching 65,000 downloads on the strength of their advertising. That snap you just heard was the handle of the vase coming off.

I accept their new dates. They’ll promote my book from November 14th to November 17th, so I confirm. Now I’m scrambling; desperate to change the dates with the other advertisers. That’s me gluing the handle back on the vase.

I think I’m just about done. I’m just sitting back and taking a deep breath, when I notice the price of my book has inexplicably changed from $2.99 to $3.77. I try to change it back, but the pricing is greyed out and I can’t. I email Amazon. They tell me it’s to do with territories. I then realize the book is only available at the promotional price in the UK and the US. That’s fine. Everything is in place. A couple of advertisers can’t accommodate me, and one can at a higher price.

At last, I can relax. I have to. The stress from all this has triggered a high-pitched ringing in my head. I need to step back and let the promotion run its course. I have too many other things going on in my life.

But I can’t help myself. I just have to check I have the dates right. I change them to make sure the correct price will be in operation when the promotion starts. This is the equivalent of tipping the vase over to check the hallmarks. When I come back later to check that everything is in place, I see my book isn’t live, it’s a draft. The chip is now lying on the table. I upload the file again. I know I can’t check it for another twelve hours, but I don’t know what else to do. This is me gluing the chip back on. It’s a mess, but I have no other choice. I go back to check the status to discover the publication dates have changed.

What!

The damn vase is now stuck to the table because I can’t change anything for another twelve hours!

Aaarrgghhh!

I write to Amazon. I’m sending them crazy. I’m sending myself crazy. My counselor tells me she’s glad I’ve got something else in my life. I’m wishing I didn’t. I make a note to tell her I’m way crazier than she thinks.

But here’s the thing. I don’t think I’m alone in this. I think it’s a symptom of someone facing the inevitable when caring for a terminally ill loved one, and trying to keep control of something.

Next week, beginning November 14th is my book promotion. I discovered that the amazing Karen Dionne is also promoting her thriller, Boiling Point. It’s a fabulous read. It’s the perfect time to grab it along with The Candidate’s Daughter. I suggest you get both.

And wish us luck. I, at least, am going to need it.

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When You Hit Those Rocks … Yet Again

There'll always be, for you and me...

There’ll always be, for you and me…

Yes, I know – this post is really late. The reason has nothing to do with apathy or laziness. I wish that were the case. It’s all to do with energy levels. And I wish I had some.

As some of you may have noted, I put a note on Facebook a week or two back, advising my friends that my Girl had slipped into a coma. I can’t tell you how much the love and support from all of you meant to me. So, here’s the story behind that post:

My sister Chookie Lou arrived on the Thursday. We figured that was an auspicious day to invite the entire family over to lunch. Yes, that’s right, I don’t have enough stress in my life so I feel it necessary to create more.

I admit that up until then, I’d been lax. Despite the Girl repeatedly reminding me, here it was mid October and I still hadn’t put up the Christmas tree. So Thursday afternoon, I spent a half hour wrenching fake Christmas tree branches into position and decorating them while the roast cooked. At 4 p.m., Chookie Lou went to pick up Mum, but while she was gone, I got a call from the Girl’s program to say the Girl wasn’t well, so as soon as she came in the door, I showered her and put her to bed.

I thought she’d picked up a bug, so I didn’t give her dinner. Instead, I gave her water to keep her fluids up, and at 9 p.m., after everyone was gone, I went to tuck her in and give her more water. She looked dazed and floppy. When I asked her if she wanted anything, she didn’t respond. So I called an ambulance.

Chookie Lou and I followed the ambulance to Accident and Emergency at North Shore hospital. By the time we got there, the girl was unconscious, only responding to discomfort.

I couldn’t believe it. Seriously, she did not look that bad. I kept telling Chookie, “She didn’t look this bad.” She agreed, but it made no difference. In what seemed like a matter of moments, my Girl had become seriously ill.

We sat with her, going through countless scenarios of what could have happened had I not called the ambulance when I did, when a nurse swept in and took our details. I asked how long the wait was. She told me they were incredibly busy.

“Incredibly busy” isn’t good. I once sat for eleven hours in Accident and Emergency. I told her this was not my first choice. She took one look at the Girl, one look at me, and said, “I have a friend with a disabled boy. She never brings him in unnecessarily either. I’m going to get the doctor.”

We heaved a sigh of relief and gratitude. Two minutes later, the Girl was surrounded by doctors and nursing staff. They X-rayed her, took a Cat scan, put in a catheter, and told me she was in a very bad way. How far did I want them to go to resuscitate her? Did I want them to operate? I told them I wanted nothing invasive, nothing traumatic. Yes, just let her go quietly.

They told me not to worry, I’d made a good decision. I told them it didn’t feel that way. I told them that I when she was stable enough, I wanted to take her home. I didn’t want her dying in a hospital bed. I wanted her to be among her toys and in her beautiful room with all her beautiful things around her. I wanted her to be in a place that was comforting and familiar. They told me it would be hard work, that I’d need support. I told them that’s what she’d want. That’s what I’d want. So at 2 a.m. Chookie Lou and I left my Girl in the A&E, and reluctantly went home.

I woke early the next morning, wondering where I’d find the strength for the next few weeks, months, years, without my Girl. I wandered into her room, looking at all her artwork on her walls, at her beloved toys, at her life here with me. I had no idea how I could let it go. It was too soon. I wanted to call up the hospital and tell them to do everything, everything they could to keep her with me. But at the end of the day, I knew I was only postponing the inevitable. I would only have to go through this all over again. And I didn’t want my Girl to suffer.

At 9:30 a.m. Chookie Lou and I went back to the hospital. My Girl had been moved to Ward 10. The very top of the hospital, in her own room. I knew she’d like that.

But as we entered her room, to our astonishment, the Girl was awake.

“She’s conscious,” I said.

“Yes,” the nurse told me. “But she’s very weak.”

I took my Girl’s hand and said, “Hello, Baby, you gave us a fright.”

She gazed up at me and said, “Eeeeeecccks Boooooox Gaaaaaammmes.”

“Really? I mean, really? You come out of a coma and you’re asking for games?”

“P-p-preeeessssents,” she said.

“This,” I told Chookie Lou, “is what brings her back from the brink. X-Box games and presents.”

“She’ll want Christmas next,” Chookie told me.

“Chhhrrrriiiistmaaaas,” said the Girl as she flopped exhausted back onto the bed.

“Dear God,” I said. “I can’t believe it.”

“You know what?” said Chookie. “I think I can.”

This is the fourth time this year that we’ve played out this scene. Not once has the emotion or the stress or the trauma been any less than the rest. Each and every time, we prepare for the worst. I have it on good authority that this is not unusual; that although people believe that the last months or years of a terminally ill person’s life are a steady decline to the end, it rarely happens that way.

What really happens is a series of traumatic, life-stopping, brain-numbing races to the hospital. It’s a series of heart-breaking realizations, one after the next, after the next, that this is the one – the final one; that there’s no going back this time. What really happens is you keep riding this rollercoaster of constant peaks and crashes. You got through the last one and now there’s this one. If you get through this, there’ll be another. But you never know which one will be the last. You just hang on and keep rolling with it, knowing that somewhere around one of these bends is the end of the line.

I know I’ve said this before, but please think about this: If you know someone who’s caring for a terminally ill loved one, chances are this is what they’re going through. It’s a tiring, traumatic job, and there’s rarely room for anything else.

So here’s my plea: don’t wait. Call them up. Tell them you’re thinking of them. Cook them a meal, send them a card, make them feel they’re not alone.

Because this is a job that no one signs up for. It’s a job with set hours of 24/7. It’s a job with no perks, no set holidays, and there’s only one way to sign off.

And they do it all for love.

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I Don’t Understand, and I Won’t Remember, So I’m Not Listening.

My Bed

My Bed

In my day-to-day life, I deal with a Girl who listens and remembers, but doesn’t understand; a mother who listens and understands, but doesn’t remember; and a dog that remembers and understands, but doesn’t listen.

I swear, when I’m old and gray I’m hanging a sign around my neck that says, “Unless you’re incredibly interesting or telling me how much you loved my book, I don’t understand, and I won’t remember, so I’m not listening.”

I know, right? It’s a proven formula.

In the meantime, I have other issues to deal with. If you’ve followed me on Facebook lately, you’ll know that the most interesting conversation I can offer revolves around how much sleep I’ve had—or rather, how much I haven’t had.

The Girl goes through periods where her entire internal engine seems to seize up. I’m not going into details here, suffice to say that at times her care management becomes incredibly challenging. Take Friday night. She had dreadful diarrhea. I had care support in overnight, but even so, I didn’t get to bed until 11 pm. That was okay. I got some sleep.

Saturday turned into the nightmare of Friday past. The Girl had stomach pains, ear ache, sore feet.

At 10 pm I got up and gave her Paracetamol with Codeine and went back to bed.

At midnight I got up because she was moaning. She seemed fine, so I tucked her down.

At 2 pm, she woke me up singing—yes, singing. I yelled at her to “Shut up the singing and go to sleep. Mummy’s turning into a grizzly bear and once that happens, it’s all downhill from there.” She quit the singing and chatted to Lilly Lion and Dead Cat for another hour.

At 4:30 am, we were both still awake, only the Codeine was wearing off and she began to wail. I got up, gave her Paracetamol liquid, took her to the toilet, and went back to bed.

At 5 am I got up because it was pointless trying to sleep.

At 6:30 am she fell asleep and stayed that way until 9 am when I woke her.

I had a repeat performance on Sunday, and, to a lesser extent, again on Monday. In desperation I called the Hospice community nurses and asked for help. Two nurses came straight out. They assured me I was not being “a big sookie-bubba who was asking for way more than she deserved” (Not the way I posed it, but the way I felt). They told me I was doing fantastically well, and that it’s dreadfully hard with someone you can communicate with, let alone someone you can’t.

The next day I spoke to my mother. She told me to go and have my hair done and get a little pampering and that she’d pay for it. (I did not let her forget it)

I have people tell me they could not lead my life. They tell me they could not do what I do. But here’s the thing…

I’m so utterly, utterly grateful.

I’m on a miniscule income and I make sure I cope on it. But you know what? I am so frikkin’ grateful for that income, I can’t even tell you. There are countries around the world where people in my position simply have to do the best they can. I’m sure they, or their loved ones (maybe both) live tough lives then die early.

I’m grateful for the community nurses at the Hospice who keep a constant check on how we’re tracking. I’m grateful that they know what I’m going through and have access to the resources to help me. I’m grateful for Sasha, my wonderful counsellor, who tells me I’m doing great, and then sits for 55 out of our 60 minutes to listen to me drivel on about how my book is going.

I’m grateful for my sister who calls me and tells me how much she loves me, and gives me more support and love than I ever knew a sister could—and that’s saying something.

I’m grateful for all my friends wherever they are. I’ve developed friendships all over the world through my blog and my writing. I have the most spectacular bunch of people spread across America, Britain, Australia, and a million other places who cheer me on and send their wishes, their love and their support. I cannot say how much this means. (I even had someone in Mongolia who dropped by my blog. I’m still wondering what they made of it)

And yes, I’m grateful for a mother who may not remember, but who reaches out when I need it.

I’m grateful for a Girl who’s given me more joy than anyone could know.

The dog—I’m not so sure about …

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