h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

Well. I spoke too soon. My own relations are still good, but something else has happened.

A little more than a month ago, dad had a stomach bug, very swollen, and points of pain. It passed.
A few days later, mom got the same thing. Only, it didn't really pass. Her stomach got more and more swollen.

Eventually, she went to the doctor, who thought a)It's indigestion b)It might be in your mind. Some blood and urine work was made, but showed nothing.

It didn't get better, she went back, and got a referral for ultrasound exam at a nearby smaller hospital. But before the referral hospital even came back with a date, she went in urgently, late in the evening a week ago.

The swelling in her abdomen was so huge, dad said she looked nine months pregnant. And it was pressing on her organs, so she couldn't breathe well. So they went to ER.

Some quick x-ray happened, and determined that the swelling was fluid.

Towards Thursday morning, she got moved to a ward. More x-rays and scans.
After that, drains. 3 Liter came out in about an hour. Then they stopped for a bit, not to shock the body.

She was moved to the surgical ward on Thursday afternoon.

More to come.

QT

So. Since Thursday, what's happened? Mainly waiting. And waiting. They pulled the drain on Monday, but it still seeps through the wound, and she got a stick on bag thing, to catch it. So still walking arund with a bag.
Yesterday, she went in for a fine needle biopsy, three points in the liver were sampled.
I wonder if there will be news today.
QN

On Friday, mum had a colonoscopy, and biopsy of the large intestine tumour. And then she was released home.

My sweetheart and I went to visit, and had a nice time, and a good meal. I understood that she will not be cured, but they may be able to delay the process, giving us all more time to prepare for the end. But the end *is* coming. We just don't know when.

I'm being very straight with the kids, and it's hard to take in, but I hope truth is better than veiled "maybe"s.

I even mailed my brother, asking to see him, but he wouldn't. But he called! So we had a chat, and it was good. He's got a lot of his own problems, him, and his son, but we talked about that too. I tried to be a good sister, offering to help more.

QT

Today is March 26.
On Saturday, the 22nd, she was nauseous and vomiting, couldn't keep even small amounts of liquids down.
On Sunday morning, 23rd, dad took her to the ER, and she was admitted to the ward around lunch time. Still very sickly feeling.
They managed a tube down to the stomach, to empty out any content, and ease the nausea, but not much success.
On Monday, they took the tube out, and were planning for a new drain, but it got put on hold.
On Tuesday (yesterday) I got to talk to the doctor, together with mum and dad.
On one hand, it seems to be a slow growing tumour, which is good. But the mother tumour in colon/appendix area is huge. Bigger than a fist I think. There are lots and lots of spots on the liver.
And it's clear she is very ill - which is hard to grasp. And she won't be cured. They hope to stop progress, or even slow it down, but she won't be well.
I think they put the drain in after I left, but I haven't really talked to mum yet.
Tomorrow is a new meeting, this time with the oncologist.
It scares me.

QN

So, we have talked to the cancer doctor. Well, one of them.
In the nearest plans:
1) Get mum on a nutrition i.v., to get her general wellbeing and stamina up.
2) Maintain pains and nausea by more drugs.
3) Move her from surgery ward to cancer ward on Monday.
4) Start chemotherapy on Tuesday.

I hate that she has been deteriorating so quickly. That it can't be cured - they know this, and are open with it.
But action feels good. At least it's not just waiting.

QN.

Yesterday (Friday), instead of Monday, mum was moved from surgical to cancer ward. My guess is that they found a free bed, and took the chance to do it immediately, rather than wait over the weekend. Because Mondays are full of the Catching Up to take care of all non-urgent things that back up over the weekend, so chances are that the Monday move might have been delayed anyway.
So, although it happened on 30 minutes notice, I think it was a good thing.
I visited around 4pm, and she was pretty ok, had coffee and a little cinnamon roll. Had been eating since the day before - which feels like a great improvement - even though very small portions.
And the new room is a two bed place with a nice roommate, instead of four beds. Also, cherry tree outside.
And some pictures on the walls, and generally a bit decorated.
Will go visit in a bit.

QN

Back from the visit.
One of her sisters came for a surprise visit, and mum really liked that. She perked up, and we had both brought sweets, which she appreciated.
She isn't in pain today, and not nauseous at all. Eats. Small portions, but finishes the plate.
My son also came to visit - on his own idea. Was nice.
After supper she needed to rest.
QN

Mum is home.
She started chemo on Tuesday, first parts of the cocktail were delivered within a couple of hours, and then the final bit slowly by a pump over 44 hours. Then she came home yesterday (Friday).
Today we visited - the whole bunch of us, me and my sweetheart, my son, my daughter and her sweetheart.
I cut her hair - it was so long and just stood up in all directions, because she's in bed so much. She's got really thick hair, it's incredible. And it might fall out from the chemo.

I so hope the chemo works.

She was tired, and feels frail. A bit pale, walking like an old lady. She'd been a little sick this morning, but not at all as bad as we feared. Let's hope it doesn't get worse.

QN

April 10.
She's been home after the chemo, and is doing ok. Very tired of course. She's had a visit by an old friend, and also her sister stays there to help out and distract. Which means dad feels freer to go play golf a couple of times, and doesn't have to do all the cooking (he's learning, but isn't totally up to speed I suppose).

On Sunday, she goes to give more blood samples, and on Monday she will be admitted again, and on Tuesday the next round of chemo starts.

QN.

May 5.

Third round of chemo has been given. Mum is home again, and a bit more tired this time - they increased the dose a bit, since she's been doing well.

QN

May 15
Fourth run of chemo is administered.
QN

May 19.
Mum was over for a birthday supper for one of the children.
She is really frail now, weak, a little shaky, and really tired. I hope this passes and that it's from the chemo, and that it's not the cancer hitting her. It's scary.

QN

June 25.
Six rounds of chemo are over, and mum has been for a scan and x-ray to see what effect it's had, but won't hear the outcome until next week.

We wait.

QN

The last few chemo rounds really made her very tired, and she lost all appetite, which doesn't make things better - she needs food for energy and to heal, I think. But it's hard for her to eat still.

She is feeling a little better now, that the chemo is over and leaving her body. More geist, but still no appetite.

QN

8 July, Tuesday.

A week ago, she had the talk with her doctor, and got the news that the chemo just barely had managed to keep the same levels of cancer in her body. No more effect than that. At that time, she wanted to go for a second treatment round.
Since then, she lost more and more energy, and could not even drink enough.
On Friday, she went to the nurses office to take care of the picc-line dressing. They considered her in such bad shape that she got ambulance transport to the oncology ward, for dehydration and ascites.
I visited her then, and the on call doctor confirmed these things. She was pretty clear, but mum decided to wait with draining the ascites until Monday.
On Saturday, she was taken to get the drain anyway. After the procedure she was really groggy and tired, which could be explained that she was given morphine.
She was sharing a room with a man in much better condition, but I asked if there was a chance to find a single.
Here it gets muddled, I can't remember if she got the single on Saturday or on Sunday.
Either way, she got a nice double size room to herself, and there's a pull out armchair that makes a simple bed for dad, and more chairs and a bench for visitors.
Yesterday, she went to the bathroom in the morning, but it was so hard - she can't walk with a zimmer even, and had to be taken on a special bathroom wheelchair. So now she's got a catheter for that.
She's much weaker all the time.
She managed to eat a few teaspoons of fruit sauce, and some rice pudding, but just barely. She's been thirsty, but even drinking with a straw is complicated.
She has moments of clarity, but mostly dreams (vividly, moving hands and mouth) and drifts off quickly when she's been speaking.
Yesterday, there was a decision to move her to Hospice care, and I hope the move comes today.
Lots of aunts and uncle, some of my cousins and some of her golf buddies visit.
I've talked to my brother, but he can't really bear seeing her so poorly, and he's got enough problems of his own, so I understand.
Mum asked for him, but we vaguely said "after you move to the other ward" and later she stopped asking.
She felt the catheter like she needed to go to the bathroom, and it only took seconds after each explanation before she wanted to go again.
She speaks of going home, and it's hard to say no...

I'm going to see her now.

QN

Later that day, she was indeed moved to hospice care and is still there.

IV nutrition was stopped, and today I think they stopped the glucose and salt IV too. She gets painkillers, anti-emetics and some calming drug in a cocktail which is delivered subcutaneously, about 20 ml over 24 hours.

She mostly sleeps, but today she has been wanting her hand held almost all the time. She wouldn't let dad go home to water the plants and bring the mail in. Eventually he snuck away, though.

So. Weaker by the day, harder to say words, harder to focus on what's going on, and drifting away.

QN

It's over.
QN

Now, my aunt is very ill in a similar cancer. Hers started in the stomach, and is already spread to liver, abdominal membranes (right word?) and even spine/skeleton.
I've talked to my GP, and hope to be assessed for Lynch syndrome, a hereditary type of cancer gene. That would mean an increased risk of various cancers, mainly colon/intestinal and endometrial. We shall see.
QN