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How did I get here? Cancer Sucks!
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There's been some difficult stuff going on in my RL, and I need to write it all down and get it out of my head, so . . .
Deep breath
Late last year my husband, S, began complaining of a sore throat. He's the kind of male who won't go to the doctor unless he is literally dying. He finally went to his GP in January and was told there was an issue that needed more investigating. He was supposed to go back to the GP in 2 weeks, but we were on holidays then, so he ended up not going back until mid March. GP sent him to a specialist, but the earliest appointment was early April. Consultation, camera down the throat and $400 later the specialist says Cancer - two of them, one in the mouth, one in the throat. Next appointment is the biopsy.
By now S has lost almost 20kg because he struggles to eat (and because apparently Cancer can do that to a person anyway).
Now there are appointments at the local hospital with the Radiation Therapy Dr, the specialist in Chemotherapy and a dental team (whoa wanted to take all his back teeth out at first, but changed their minds when they saw where the mouth cancer was, and how hard it was for S to open his mouth wide).
During all this I'm still juggling work commitments as we are building up to one of our busiest periods, which covers pretty much the entire month of May. I'm sharing appointment chauffeuring duties with his Dad.
It is decided that due to S's weight loss and difficulty eating it is advisable to put a feeding tube (that they call a peg) in his stomach. This is basically a precaution in case he can no longer swallow anything at some point during early treatment. Surgery after Chemotherapy begins will be difficult to recover from.
As it turns out the peg is never actually used for feeding S.
The first cycle of Chemotherapy begins on Wednesday 8th May. The plan was to do at least 2, probably 3 cycles of Chemo and then begin combination Radiotherapy/Chemo. At first things seem to be going okay. Three medications are administered as part of the Chemo - 2 are done on the Wednesday at the Cancer Clinic, and the third he has to carry around with him for 5 days, returning on Sunday to have the rig removed once that one is done.
The peg starts leaking during these 5 days. He is given advice over the phone not to worry about the leak - but I wonder about that advice. I can't be with S all day - work is busy, and he's a grown up who can ask for help if he needs it. Only he's the kind of male who will not make a fuss if he's feeling "not okay".
By Tuesday (14th May) S is not feeling much like "eating" - which consists of swallowing soft stuff like milkshakes, jelly (jello), custard and the like - and I basically have to force him to go for a walk around the block with me, just to keep him from lying on the couch all day. (Tuesday is my regular day off). He seems okay, in the "so-so" sense rather than the "fine" sense. He's not particularly nauseous, just a bit Blah.
Wednesday - while I'm at work - S stays home all day, which is unusual for him. He is a social butterfly who can't resist going across the road to the Bowling Club just to sit with his mates for a bit. The peg is still leaking, and he feels tired and a bit yuck. By now I have asked him a few times if I should be calling the hospital for advice and he says no - doesn't want to make a fuss. I don't stress too much because he has an appointment at the hospital on Thursday - it's with a Social Worker, but I know that he will be at the hospital, where they will ask him how he's feeling, and if they think he needs something they will take care of him.
Thursday comes and he doesn't want to get out of bed. I go to work, telling him to make sure he gets to his appointment, even if he doesn't feel like going.
His Dad calls me at lunch time and tells me S didn't go to the appointment. He got in the car, they got down the road, then S told his Dad to just take him home. His Dad tells me S doesn't look good, he thinks S should be in hospital and I wonder why he didn't take S straight there if he was that worried.
I get home just after 5pm and S is in bed feeling miserable. I don't get much of a good look at him - the room is dark - but he talks to me. He's not feeling nauseous, not throwing up, but also not eating or moving much. Over the next few hours he's up and down to the toilet at least once an hour. I ask if he has diarrhoea, because if he does I should take him to hospital. He says no, "not much is coming out".
It's after 10pm, Thursday 16th May, when he calls out to me from the bathroom. Something about the way he calls out makes me get straight up to see what's wrong - normally I yell back "what's wrong?" or "just a minute", but this time I think I had an instinct that said something was wrong.
I find him sitting on the toilet, slumped forward with his head between his knees. He can talk to me at this point, but I have to help him sit up - he really can't move - and his skin is quite yellow (which alarms me). By the time I have him sitting upright he's not talking to me any more, his eyes are only half open and not blinking and he can't squeeze my hand. I run and get my phone and call an ambulance. Now his breathing is laboured, and as the emergency call taker is asking me to "say now every time he takes a breath" his gasps are getting further apart.
I have to get him clumsily onto the floor of our tiny, narrow bathroom and give him chest compressions. 2 ambulances are on their way. Minutes later I have 4 ambulances working on my husband in our tiny bathroom, and I have no idea what is going on.
By midnight S is in emergency at the local hospital, and I'm in a private waiting room, alone. I call my Mum - I've already called his Dad on my way to the hospital in my car (they didn't take me in the ambulance). It's about 12:30 when a doctor comes to talk to me. Infection. Kidneys and liver struggling. Blood pressure through the floor. No white blood cells. This is by no means good.
By the time I get to see him in Emergency I have my Mum and his Dad with me. S is basically in an induced coma and about to be moved up to ICU. It's about 1:30am.
Once he's moved to ICU we wait in another waiting room for more news. A surgical consultant comes and sees us - I think it's nearly 3am - she says surgery is not an option. The infection is in his digestive system. There is no clear area to surgically remove, and his system is so weak it would not take well to surgery anyway.
S's Dad leaves soon after that. This is hard for him. It was only 3 years ago that he was here in this very ward with his wife. This is where she passed away after an infection she just could not fight.
I think it's after 6:30am when I decide to go to the intercom and buzz the nurses station to find out what's going on. They let us in to see him. All they can tell us is that they are throwing every kind of medical support they can at him in the hope they can help him fight off the infection - blood products, meds to raise the blood pressure, antibiotics. He's been ventilated through a tube in his mouth since the ambulance. They have to run a heating vent to raise his body temperature. They let me into the room, but I see no point in holding his hand or anything - he is unconscious, he won't know I'm there. We go home.
I had about 3 hours sleep. By the time I could crawl into bed it was about 8am. By 11am people are starting to text me asking what's going on, checking if I'm okay. I had managed to text my boss about needing to call an ambulance while I was in the emergency waiting room. He's now replied to say I don't need to be at work today, but in the back of my mind is the fact that I have a show to work on, starting on Sunday - we are so busy that there will be no one else who can replace me on this show. (And we had a Federal Election on Saturday as well, so I was going to have to fit voting in around visiting S).
At some point on this day a doctor calls me to get permission to administer a drug to S. This drug is not approved for use in Australia, but it is approved in the US. As a result they will have to ship it in from interstate, because there is not much stock in the country, and I have to sign my permission for them to use it. It is a reversal drug for the 5 day chemo medication. It works best if administered soon after the chemo treatment - we are already past the ideal timeframe, but it is our best shot at helping S.
S is unconscious and fighting for the next couple of days, and I'm half dreading that call that says things have taken a turn for the worse, come now! Instead, I see him for a short period each day, but he doesn't know I'm there. And I keep doing the work I have to do - at least this show is close to home for me, and close to the hospital.
He is being supported by the blood pressure medication (Noradrenaline) which they are slowly able to reduce in dose, his temperature is stabilising, and the chemo reversal drug has had some positive effect. His white cell count is coming up - probably with the help of the blood products he's been given.
By Tuesday 21st May S is awake and aware, and they have been able to remove the ventilator tube. The Physio is concerned about how weak he is - movement in his arms and legs is limited. He is breathing on his own, but it's hard work because his muscles are weak. His lips and mouth have been bleeding a bit around where the tube was. Still, we are seeing slow, small improvements and hoping for the best.
On Friday they have to re-insert the breathing tube - he is too weak to maintain his breathing without assistance. This is a set-back, and comes with a warning that the breathing tube can't stay in his mouth/throat for too long, because it can cause all kinds of complications, especially in his compromised state. They tell me that without marked improvement soon they may have to perform a tracheotomy and insert the ventilator there.
By this stage they have moved from nasogastric feeding to Parenteral nutrition (intravenously). The peg is still leaking.
I'm now getting into a rhythm visiting S when I can for as long as I can around my work hours, and answering enquiries about his health and well wishes from family and friends on both my phone and his. I no longer have rehearsals every night, and the weekend's performances go pretty well. I know he's still critical, but he's stable and despite the set back S seems to be on a path of slight improvement again.
The next set-back comes in the form of a flare up of the infection. The gut is still very inflamed - particularly the bowel. Moor blood products, more antibiotics, Noradrenaline dosage increased again. There is a mention that he probably has a slow internal bleed somewhere. Clotting is a problem - the bleeding in his lips and mouth is evidence of this too.
Before I go to my Friday show I have to sign the permission for them to perform the tracheotomy - they've decided it needs to be done, and an emergency surgical team will do it but it could be a day or two before the operation actually goes ahead.
Through this entire week S has been awake and aware, communicating with me as best he can around the breathing tube and the bleeding lips, which are scabby and sore. He is still very much alive mentally, still able to laugh at our corny jokes and request the music be turned up!
I see him as early as visiting hours allow on Saturday 1st June - his 42nd birthday. i have 2 shows on this day, and won't be able to see him again until Sunday. I leave the hospital soon after his Dad and brother arrive for a visit, around 11:30.
Around 12:30, while I'm running sound checks for the matinee show, I get a phone call asking me for permission to do the tracheotomy. At first this confuses me - they have permission already. Apparently they are now doing it in ICU, not in the emergency theatre or wherever.
He was more drowsy on the Sunday, after the tracheotomy, but still essentially in the same condition - stable. I cried off sick for work on Monday and spent a bit more time with him - I knew I had to be at work on Tuesday for a morning staff meeting.
The hospital social worker called me before I went to visit S, wanting to arrange a "family meeting" for this week some time. At first we settled on Friday morning, but later they asked me if we could arrange a time earlier in the week. After re-arranging my work schedule we agreed on 3pm Tuesday, even though S's Dad would not be able to be there anymore. Then I arrived for my Monday visit with S.
We had the radio on - S likes to have music playing, even when he's falling asleep - and the announcers were talking about the State of Origin (a Rugby League series of 3 matches between rival state teams, New South Wales and Queensland). I told him I'd make sure we put the radio on the right station on Wednesday night so he could listen. Suddenly the most important thing in the world for him was finding a way to be able watch the game! I told him I'd find a way.
Tuesday comes and I get through my staff meeting and a few other things on my now half day before running back to the hospital for this family meeting. It turns out this is just me, S, his ICU team, his oncology team and the social working re-capping what S has been through so far, and then scaring me (and more so S) by saying out loud the words "Palliative care". Essentially they are telling us we are out of further options. He is being given everything possible to assist recovery - the blood pressure meds are now at a low dose, but they still have to support his blood pressure, he is still on a ventilator to assist his breathing, the infection is still not improving, but it has not got worse, they have run out of different antibiotics to throw at the infection, it still seems the bleed is present, the scabs on his lips are still apt to bleed more than they should if they are disturbed. If his organs start to fail there will be nothing they can do - surgery will more than likely not be an option, and one failure will lead to another until his heart, then brain will go and that will be it. So, if we start to see organ failure palliative care becomes a viable option.
This is the point at which I am in disbelief. He can't be that bad. He is still totally alive mentally. How can we be discussing "making him comfortable until he dies"? And S is even more disbelieving and scared than me at those words. Yes S has looked better, yes he has spent over 2 and a half weeks in ICU, yes he has a lot more hard fighting to do if he's ever going to beat this, but his brain is fine, he is completely aware of where he is and what's going on around him - just a bit inclined to tire quickly.
I stay with him longer than I intend to that night because he starts to complain of stomach pain. It gets worse. Really bad. They give him morphine. He says it doesn't help. His breaths start hitching, like something is stabbing him or something. He finally gives me the description "like hiccoughs, but sore". I can see how swollen his stomach is - fluid retention. And he is also complaining that he wants to lie on his side. We have to wait ages for the right number of people to be available to turn him on his side, to a more comfortable position. But his stomach is still giving him intense pain and whatever spasms are causing the breath hitches and grimaces.
I have to leave him like that - in pain, but with the nurse on duty doing whatever he can to ease the discomfort, administering Morphine whenever possible - visiting hours are over and I'm asked to leave.
On my way to work on Wednesday morning (6th June) I get a call from the head doctor in S's ICU team. He wants to know what time I can be there today - S has had major abdominal pain since last night (I know, I was there!), and they are investigating the cause, but it looks like the kidneys are failing. He tells me he will update me via text when he knows more, I tell him I will get there as soon as I can after work. I get no texts all day.
I get to the hospital around 4:45pm - armed with the all important iPad mini for him to watch the State of Origin game on (yes, that is still a priority for S! God love him!!). I'm told to S has been taken for a scan and I need to come back in about an hour. So, when I return and he's back from the scan, I get the iPad hooked in to the Wifi and open the app he needs. Then I have to have the conference with the doctor.
His kidneys have failed. Fluid is building up in his stomach. They want my permission to put a drain directly in his belly to ease the pressure. I give it. I have to wait outside while they get this done. There is a brief discussion about surgery - but that would literally be futile. Again we have the conversation about palliative care. This is the beginning of the end. His body is shutting down. S can't fathom this. He says the words that still break my heart, pointing to his head to indicate his mind he mouths "I'm still alive". He has so much to say, but we can't understand him through the scabs on his lips and his inability to make any real sounds. We try to get him to right things down, but his hands are really too weak. The doctor has asked if he wants to have the pain medication increased so he can slip away peacefully. The sentence he writes is "I just want to see how I go" - he wants so badly to keep fighting. He dosen't want to die.
Once the doctor is sure he is comfortable for now he leaves us to watch the game - no S has not forgotten the game! He does not administer the pain medication, but he gives the authorisation for it's use once S requests it. And although I had not planned to stay and watch the game (which starts around the time visiting hours end), I do. They let me stay. He nods off a bit during the second half, but I know how much seeing it means to him, so I rouse him for the good bits, and make sure he sees the end - a good result for him, a come-from-behind win for his team. I say my goodnight and leave S to get some sleep.
I have told my boss how dire things are, and he has told me I have leave starting now for as long as I need.
I get a call around 9:30 on Thursday morning asking me what time I will be getting to the hospital. Apparently S has been asking for me.
I had a couple of things to do before I could get there, so I arrive just after 11:30am. S is not as awake and aware as he was last night. They have started giving him the pain medication (Fentanyl) the doctor was talking about, and it has affected S's ability to focus, and therefore communicate. He has apparently been asking what's going on - last night he knew the story, now he's unclear. I wish they had held off on administering the drug. I would have liked to speak to my clear headed husband today. His kidneys have failed, the liver is failing. We are out of options.
His Dad and brother are in and out today - we are kind of rotating our breaks until early afternoon.
A Palliative Care consultant, and the social worker and the nurse looking after S want to have a meeting with me, and it takes me longer than it should to realise that this meeting is for me to give the final word on the beginning of the end. They are focusing on making sure I am okay with what's about to happen. Making sure I know that I have the final say, and once I give the go ahead they will stop all meds that aren't making him comfortable - the Fentanyl dose will increase, but the feeding, the antibiotics ad finally the Noradrenaline will be stopped. It will then be a matter of minutes or hours before he is gone. I know they are trying to be helpful, but having them ask if I'm okay, having them tell me how strong I have been for him and how much of an advocate for him I have been is only making my heart break more.
That afternoon, his brother, sister-in-law and their 4 kids, my brother and sister-in-law and 2 of their kids all come in to say their farewells. The Fentanyl dose has already been increased, so S knows they are there, but he is so drowsy it's hard for him to open his eyes. His sister-in-law wants to stay with me. She doesn't seem to understand I need to be alone with S for this. But, at last she gives me space. I'm the one who has to give the green light. It's really hard to do, but I know we are out of options.
As soon as they stop the blood pressure medication (Noradrenaline), S opens his eyes and looks at me. He is as focused as I have seen him all day, and I explain to him one final time what is happening, tell him I love him, tell him I'm sorry things turned out this way, sorry for all the things we had planned that we won't get to do together, and tell him it's time to stop fighting and just let go. I try to tell him not to worry about anything or anyone, that it's okay to go. I hope he understands. It must be about 40 minutes before he is unconscious. They stop the ventilator. I turn off the radio - he can't hear it anymore, and he and I have different taste in music! I know he can't feel it anymore, but I won't let go of his hand until he's gone. He holds on for over an hour without the ventilator. Then there are no more breaths. I know he's gone. His hand is already much cooler than it was an hour or so ago.
I am a widow. It has happened so fast. It feels strange, but I don't think the full weight has hit me yet. I am bursting into tears at random moments. I am thinking of stupid things like "what am I going to do with all these Fruit Loops - he eats those, not me!", instead of dwelling on the hard things like having a funeral to arrange, and dealing with all the people who keep wanting to do things for me, or stay with me.
I am okay on my own. I am not the kind of person who will collapse in a heap, or fail to feed myself or whatever. I need the alone time to do my crying. And I need to be free to do some of the things that make me feel normal, without feeling like I'm being judged by anyone for not acting the way they think a grieving widow should. (they probably aren't judging, but I would feel like they are).
This group is part of my normal.
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"First things first, but not necessarily in that order." 4th Doctor
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Playing darts with the Condor's feather shuriken... 
