Another of these awful life remembrance days

My brother’s birthday. I try to forget these sort of days because they make me so upset. I literally have blocked out the days that my father, my niece, my brother died. There was a horrible period for a couple of years where my stepmother wanted us to all get together and mark the day of my dad’s death but there was no way I could handle that.

I can’t remember the day that my brother died. It was December, I know that, before Christmas. I don’t want to remember.

But today it was his birthday and I grew up with him as my best friend and it still, STILL, hurts so much.

Is it irony? Or serendipity

My daughter star rocketed herself into end stage ulcerative colitis, courtesy fuelled by my shitty genes and her body’s response to a broken leg. No gradual build up and coming to terms with an awful alternative,  that makes surgery an easy option to choose. for her.

 

Although, when I come to think more about it, the surgery, or fatal consequences if lack of said surgery, seems a pretty easy side to pick. But it isn’t when you aren’t mentally prepared for it. (There’s a whole other story there, too, which I might tell later).

 

Ulcerative colitis is an auto immune disease and autoimmune diseases often have stress as a trigger. These last weeks since September have been extremely stressful for me. All of my diseases flared up (such pain from the ankylosing spondylitis; two bouts of iritis; psoriasis over 30 percent of my body and which won’t respond to treatment; you get the picture.

 

My internal health hasn’t been great since a bout of salmonella three years ago. I’m usually too busy to worry about it and just accept it as a diet thing that comes and goes.

Except….all the symptoms stepped up this year.  When my girl got so sick the first time, my stress levels skyrocketed. I did a lot of research once they had officially diagnosed her and I wondered if my symptoms might not fit an early stage of her disease. And then I started looking into correlations of auto-immune diseases and ulcerative colitis.  There is a link, a huge link, depending on whether you already have one or more of the following diseases:

• ankylosing spondylitis
• psoriasis
• iritis

 

So I set myself up an appointment with a GI specialist to check, just in case. This was in the works before my girl got sick the second time and the appointment came through two days before I was flying out to be with her. My specialist wanted blood tests and stool samples, both of which I provided, and he also scheduled a colonoscopy.

He emailed me the results, which showed no disease (salmonella can lie dormant in your gall bladder for years, apparently) or infection. What they did show was elevated inflammation and protein markers, which aren’t bad in of themselves but are strongly indicative of UC.  Colonoscopy needed for final diagnosis – I should get it very soon.

 

Since then, symptoms have become worse. I am fairly sure that I have the disease, at a maybe 2/3 level and I’ve just sucked it up at the earlier stages. Surgeon thinks so as well.

But if my daughter hadn’t been so ill, I probably would have gone on ignoring things.

She gets to be my adviser in this disease, rather than the other way around, for a change. I can’t say I’ve ever wanted to be this (literally) shitty club but having a supportive network already in place will help both of us.

“You shall be my roots and I will be your shade, though the sun burns my leaves.

You shall quench my thirst and I will feed you fruit, though time takes my seed.

And when I’m lost and can tell nothing of this earth you will give me hope.

And my voice you will always hear. And my hand you will always have.

For I will shelter you. And I will comfort you. And even when we are nothing left, not even in death, I will remember you.”

Did I mention how much I hate begging?

Asking amongst our family feels like begging. I wrote an email:

Dear family who love our girl as much as I do,

As you know, the last year has been a horrible time for her, health wise. The last six weeks have been the worst of her life. An incredibly urgent surgery, with little time to come to terms with the reality of needing it, severe complications; a second surgery, more complications…it has been so very hard on her.

We nearly lost her, twice, and her physical health will take months to recover; her mental health much longer. She has been in hospital weeks beyond the usual requirement for this type of surgery is 6 – 7 days hospitalisation. She is incredibly weak and very depressed.

As you may or may not know, I flew out to Calgary as soon as it became clear that surgery was required and I’ve been at her side every day for as long as I could. The head doctor wanted her to stay in Calgary another three to four weeks before even attempting to fly home but has agreed with me that her mental state is such she might well heal faster if she is home. He will let her fly but only if I travel with her and only if she can travel reclining i.e. business class. 

I’ve written to Air Canada and asked for a business class upgrade from economy for her, on compassionate grounds but they don’t particularly care. A business class ticket (for her, not for me – I’ll go economy) will cost around $7000 (edit: actually turned out to be almost $8000). Other airlines might do it for cheaper but I already have my ticket with Air Canada and can’t afford another ticket elsewhere and she can’t travel without me.

I am asking if you can help contribute to help bring our girl home? She’s your daughter, your grand-daughter, your niece, your cousin…she’s your family and family help each other out.

Please let me know how much you can help with.

Sincerely,

etc etc

My family stepped up so amazingly but the other side have totally ignored the situation. At least her dad helped but I don’t know if he even asked his family and I was too scared of losing ANY contribution of his to ask him or hassle them, even if I had contact details. Which I don’t.

Trouble is most of his family live around where I do. I do randomly bump into them. We’ve always had civil chats and I’ve always been genuinely fond of my ex FIL. Civil isn’t probably going to be the ongoing tone, sadly.

I guess the only thing worse than begging is being turned down for said begging.

Home soon, I hope

I need to go out to the desert, away from people. This has been a month of forced interaction in a city and so many people that I have to talk to.

I don’t currently live in the desert but I get to go back a lot and it makes me so happy. It feels like the place I am most myself and it feels like coming home every time.

I have no idea why. I was born in a different desert continent (left when I was two) and maybe there are residual memories? Maybe it is the wide expanse of nothingness and the lack of people (I am a serious introvert)?

Experiencing the dusky violet hues of a desert sunset or the rose gold blush of coming dawn, in silent contemplation feels like a gift. Even middle of the day fiery heat or ice cold nights don’t have enough discomfort to make it not worth while.

And, oh the stars! Under a clear desert sky, miles away from any light pollution, you feel like you could reach up and pluck those glittery diamonds from the roof above you. I actually wake up just to stay awake or a while and gaze.

Maybe I like the way it makes me feel so insignificant in the whole grand scheme of things.

I can’t make it better and it hurts so much

Out of hospital and I knew the initial response would be euphoria. She’s been away from a place where she spent four weeks, had two operations, multiple tests and was very close to not being here.

(As a digression, I’ve always wondered why people use euphemisms for death, like ‘passed’ or ‘left us’; I’ve always wondered why they can’t just say ‘die’ or ‘died’. I’ve nursed three people I love to end stage and I’ve always used ‘die’ or ‘died’. But with my daughter, I can’t seem to say those words and I don’t know why. That was almost the outcome and yet,  me, the daughter of a hospice nurse, can’t say those words. Detatchedly interesting.)

But today she’s out and yet she still has the outcome of the reason she was so ill in the first place. She wakes up and she isn’t in hospital but life isn’t better; instead, it is more real.

I cried with with her and I cry for her and all that she has lost and all that she has to face up to.

I would give anything for my girl to not have to suffer through this.

And anybody who uses the word ‘strong’ in reference to either her or I, please think again. Most unhelpful word right now, or possibly for ever.

She lived

Things are better. Physically, anyway. Not great but she has been discharged from the hospital.

Mentally, I think this is a turning point in her life and she will take years to overcome it. I am working on getting her the help she will need, both now and back home.

I feel like I am so damaged from this as well.

I get to take her home in a week or so, if she can fly the long haul (15 hours) lying down. That means a business class ticket. Nearly $8000.

It has cost me so much in coming out here, not working and buying the things she needs. Medical needs (heating pack, things that might reduce nausea, practical stuff for helping with wounds etc, hospital recommendations for supplements that they don’t supply) and some wants as well: when hospital food makes her sick, I’ll buy whatever things she thinks she might take a bite of; I’ll pay for a proper cup of tea; I’ll get colouring books and pens.

I mostly walk to the hospital but sometimes I can’t bear to walk an extra few kms through the snow to the supermarket and I take a cab. There’s the extra phone bill so I can keep family informed. Sometimes I even buy a bottle of wine and drink it. Maybe twice? I need my wits about me and I need to stay focused on helping my girl and it plain isn’t fun drinking by myself in this situation.

I’ve tried to limit my food intake to eating off her hospital tray with the stuff she doesn’t want. I have almost never been around at dinner time in my in-law’s house and I am way too embarrassed at my leaching them already for accommodation to use their food if I can avoid it.

My main food intake has been the bottles of liquid food that my girl routinely got on her meal trays and which she would never eat (the aversion nausea association is so real after just one intake). Those drinks are actually super calorie loaded and designed to help people with malnutrition gain weight – vitamin wise a good choice for me. Otherwise, not so much.

But everything adds up and changing my airticket home cost almost as much as the original price. Air Canada refused any sort of compassionate upgrade and I’ve been reduced to begging from family for funds to pay her ticket home. If she doesn’t fly reclining, the doctors won’t sign the fit to travel form for maybe another four weeks.

I am living on credit cards right now. I second guess everything I spend except where it concerns my daughter: she needs what she needs to get through this. I’m still not sure she will.

But fuck it is so demeaning begging off family. What they can’t/won’t help with, is something we’ll just have to cover. I hate being in debt so much but I don’t have any assets left to sell, apart from my car.

Forget my business: this whole situation probably means I won’t be in a financial state to make it work for years, in spite of our amazing start. It’s probably the end of it because the relationships and tours we had planned all fell through. My partner has been so understanding about my situation: yet another layer of guilt.

 

 

 

 

I used to love Canada so much

I love the people (especially the husband I was lucky enough to pin down in Aus) and I love their hospitality and I’ve always wanted to live here.

But when you go there urgently, because your daughter is critically ill, things aren’t nearly as rosy. You don’t get to enjoy anything when you spend 14 plus hours a day at the hospital.

It’s so cold and I’m so tired and snow fucking sucks when its a blizzard you have to walk through 2 – 4 times a day in the dark, trying desperately not to slip on the ice that you can’t even see.

And it is my beautiful 26 year old daughter, who currently looks like living (but it wasn’t a given for way too many days), but isn’t really convinced she wants to, given the circumstances, and her attitude alone might influence things one way or another and quite frankly, I wouldn’t blame her for opting out.

And my husband is a half a world away and I  don’t get to talk to him much and I don’t know his family well enough to lean on them emotionally, no matter how great they have been in terms of practical support.

And people keep telling me that I’m tough and I’ll get through this and I get the definite impression that some of my family members think I am exaggerating things for dramatic effect. I cry myself to sleep most nights.

And the worst thing of all?

 

I did this to my daughter. My defective genes caused this. I caused my so beloved child to suffer this much. I am the reason she is so ill, that she has suffered so much.

And I’m here, helping her endure pain-filled awful days, trying to encourage her and doing every nursing task they will let me, so that she doesn’t have the indignity of strangers doing those humiliating things; hating every day so much.

I caused this.

I don’t think I’ll ever want to come to Canada again.

 

I think the last time I wrote here, I might have been in extremis

Ah, deja vu, my old friend, nice to see you again. Wait though: isn’t deja vu meant to be a brain malfunction so you just think you are experiencing the same thing again?

 

Whatever. I’ve been here before but this is worse than the first time, and it is actually happening, so no wonder it feels so fucking familiar.

 

Tomorrow I fly out to Canada. I leave in the evening and I will be 27 hours in transit. My daughter’s surgeons can’t wait that long. She needs an operation right here (right there), right now, and I’m perfectly ok with that.

She has had her gastric specialist come by, and the guy that cuts. I wasn’t there but I am so lucky that the man I married has all of his family living in the emergency hospital city that  my daughter was brought to (yet again); they were there and they saw the surgeon and they saw the specialist and their support enabled my girl to ask the hard questions and delve into statistics.

(Can I take a moment here to feel so proud that my daughter even bothered, given how ill she is? The surgeon said afterwards that he was so impressed about her grilling of him as to technique, side effects and success rates.)

She is really, really ill. I have been awake for what seems like the past 90 days, soothing her via online chat or phone or email,where I could. I’ve been reassuring her, trying to dissuade her from bad thoughts.

 

Her body is shutting down. The main mechanism used to excrete toxins doesn’t work anymore. She is sick, she is tired; blood transfusions aren’t keeping pace any more.

The miracle biologic drug, rumoured to cost $10000 a month, (thank you socialised medical system in Canada), isn’t working. She’s had at least $50 000 worth in the last two months. Her AS and her psoriasis have never been better. But it has done jackshit for the autoimmune disease of ulcerative colitis.

 

They were talking about a special new drug that might help. Except that it isn’t approved by the PBS in Australia: they aren’t going to on go pay for her medical care here past visa legalities. They also don’t want to release her to a protocol less than their standard (my interpretation entirely).  They really pinned a lot on her responding to ultra high IV doses of steroids.

But she didn’t.

Such a scary time

I’ve been away for a week, at the start of what was supposed to be a seven week stint of work. Two trips and a few days in between, when I was going to fly to Canberra to stay with my brother and his newly immigrated family.

The first trip was one I’d been looking forward to for a while: down the Tanami Track, which I’d never done before. It was quite a hard trip, owing to unrealistic expectations set up by the office and also because of the presence of two middle aged special needs guys, travelling without a carer. But the country was new to me and it was wonderful sleeping out under the stars again and was enjoying it.

I’d been in touch with my daughter in Canada and was aware of her health situation (she suffers from the same auto immune disease that I do and was experiencing the pain of a first flare up). I could only console from a distance and feel bad that I was the genetic cause. She had taken a lot of time off work and was under a specialist, just awaiting the results of a blood test before she could move onto the very expensive biological drugs; they tried steroids for months and it didn’t help much.

Then her boyfriend cut his hand very badly and the local hospital (great for ski injuries) sent him to a specialist place 2 and a half hours drive away. My girl drove them both down, he was treated, they drove back again and her doctor called, said she was to come in immediately.

Her iron levels were so low that she could have passed out anytime and was a couple of days away from autonomic body function failure. They immediately put her in an ambulance and rushed her back down to the city they’d just been in, admitted her to hospital and started transfusing. All in all, she ended up having five blood transfusions.

They started to do tests, checking for why the iron loss and obviously internal bleeding somewhere was the cause. Endoscopy and a colonoscopy later and they thought it was ulcerative colitis at the fulmitive disease level (most severe). She was put on massive doses of IV steroids in a bid to halt the inflammation but it was a juggling act between giving the steroids enough chance to work but also wanting to do surgery before her colon perforated and she went into septic shock.

There was a very real chance she would die.

I found this out when I came back into phone range and it was devastating. I arranged that I could leave the tour (so unprofessional but the next leg was four days out of phone signal and I just couldn’t cope with that) and was poised to fly to Canada if she got worse or they did surgery anyway.

Funny, at first I was so upset at the thought of my beautiful twenty five year old daughter having to cope with a colostomy. Then I was just so grateful that that was even an option, if it saved her life.

The inflammatory markers kept going up, even with treatment. It looked really bad. Then finally they started to descend and the doctors were cautiously optimistic, although still keeping a surgical team on standby.

And now they started her on the biologic drugs and she is responding amazingly well, so much so that they are talking of discharging her in a couple of days.

I feel a bit shell shocked, to be honest. So glad but there was so much adrenaline in my system that the letdown makes me feel disgusting. Probably won’t fly out now if she continues to improve.

 

But, oh dear, I thought I would lose her and that took me back to the past.