Till Death Us Do Part

Our dear Joan passed away at 6.30pm local time here in Western Australia.

Her last hours were peaceful. If there is a Heaven, she will be going there.

Coma and a chest infection

Our Joan has lapsed into a coma. It seems as though she has a chest infection and that will most certainly take her from us.

The cruelty of it is that it may take another couple of days. We all want her to go peacefully soon.

World events seem to pale into insignificance whilst our personal drama plays out.

Hanging on

Our dear Joan is still with us. She has been sleeping peacefully all day since the Silver Chain nurse added Clonazepam to the pump. Previously, each time she woke, she struggled to get out of bed and took a good deal of restraining before she calmed down with a dose of .2ml of clonazepam under her tongue administered by me with a small syringe.

These struggles were very frightening for us until one of the nurses told us that most deaths do not occur as they do in the movies. There is almost always some ‘terminal anxiety’ and the clonazepam is specifically to help stop the anxiety. Before it was added to the pump the family was on constant watch to catch the first signs of this anxiety so that we could administer the meds about every three hours day and night. I likened these episodes to someone drowning...trying to get up and out. This morning we were all exhausted having had short sleeps during the night.

At the moment she is in a deep sleep and will probably remain that way until the end.

It is hard to describe the relief we have felt to know that our beloved Joan is not raging against those who love her and that the meds I have been administering are not just to keep her quiet.

PS: Joan just had one of the anxiety attacks and we have had to gently hold her hands and administer a top-up dose. The SC nurses are here now and are giving her a sponge bath and back rub.

Last hours

We had two call outs last night and I thought I was losing my Joan at around 3am. she became very agitated and shaking uncontrollably and although without a temperature was clammy and sweating. When she asked to sit up, her eyes appeared to be glazed over and she was itchy all over....probably retention of bilirubin. The Silver chain nurse arrived about 45 minutes after my call and then the read-through of previous treatments and questioning. Joan didn’t have pain or nausea and so all she could tell the nurse was that she felt dreadful.

After a few calls back to base Joan was asked whether she would rather be home or back in hospital. One possibility is that there is an infection. I believe her time is very near and hospital in a shared room would be pure misery at this stage. She couldn’t make the decision, so a Silver Chain associate doctor will visit sometime today.

Now, at 8.55am, she is still sleeping. We have both had a harrowing night. I have had little sleep over the last two days.

Update: This morning’s Silver Chain nurses are two who have been here before. They have told me that today is the day. All the signs are indicating so. At the moment Joan is sedated and the family are here with her.

This damn disease!

What a night! Joan was unable to sleep and found it impossible to get comfortable. We were up about six times for toileting or just sitting up.

The Silver Chain nurse who visited this morning changed the brew that went into the pump and gave Joan an injection of Oxycodone. In the U.S. Oxycodone is know as 'Hillbilly Heroin' and many people are addicted to it as their drug of choice, the effects being longer-lasting than heroin and much cheaper, because it can be had by doctor-shopping. Addiction is not a consideration with Joan.

Sophie, the ex-student of mine who is working in Queensland, must have phoned her mother in Willetton and she rang me to ask if she could bring some freshly baked scones around. I must have sounded ungrateful as I declined the kind offer. The Silver Chain nurse was here and we were quite busy and somewhat stressed.

Joan has become the ‘Biggest Gainer’ by putting on an instant 8 kilograms due to fluid retention. There is no instant fix for this and I think it can only get worse.

She is getting weaker by the hour and to get her up from a chair I have to let her put her arms around my neck and we both stand up. There have been a few close calls and I am careful to have something behind her in case we both fall.

I want to go in a car crash.

My cousin Val visited this morning and Martin and Helen are visiting this afternoon.

Home with love

Joan is home again. The ambos delivered her and helped her into bed. After about two hours sleep she attempted to reach out to the side table for a bell to call me and fell out of bed doing some more damage to herself by hitting the side table. Fortunately Helen and James were closeby looking at a house and they came immediately to assist me getting her up and onto a chair for some repairs to bleeding and bruising. After a couple of glasses of coffee flavoured milk she went back to bed. Hope she is able to sleep through the night, but I doubt she will be able to.

The Silver Chain nurse is due at 9.30am tomorrow and a hospital bed with an air mattress and side bars should be here over the weekend.

Yesterday the Oncologist virtually signed off on us by acquiesing to releasing her from hospital to come home.
As a final farewell he shook both our hands.

This from the author Siri Hustvedt...

"Every sickness has an alien quality, a feeling of invasion and loss of control that is evident in the language we use about it. No one says, 'I am cancer' or even 'I am cancerous,' despite the fact that there is no intruding virus or bacteria; it's the body's own cells that have run amok. One has cancer. Neurological and psychiatric illnesses are different, however, because they often attack the very source of what one imagines is one's self. 'He's an epileptic' doesn't sound strange to us. In the psychiatric clinic, the patients often say, 'Well, you see, I'm bipolar' or 'I'm schizophrenic.' The illness and the self are fully identified in these sentences.

The Locks sometime in the the 1990s

Sophie

Joan’s pain meds were upgraded today. She has major fluid retention again and this evening was to have a scan to determine whether another drain is necessary.

She is due home on Monday and although the Silver Chain will visit daily, I will be her principal carer. The hope is that we will have some quality time together over the time that is left.

Earlier this evening I had a call from Sophie who is an ex-student of mine from Willetton Senior High. Soph is a metallurgist on a Queensland mine site. She, like me, is an emotional person. She is following our journey on our family blog and we both shed lots of tears over the phone. A wonderful young lady!

Dietitian

My Joan is still in hospital. X Rays showed no bowel blockage, so a dietitian has been planning meals which will supposedly beat the constipation. Good plan, but Joan still has not regained any of her appetite even though she is now about eight weeks out of chemotherapy. If anything, she is finding it more difficult to eat food she was capable of eating last week.

Whilst I was with her yesterday a nurse did a calorie count and surprisingly it added up to 850 for the day.

With all this happening we were also threatened with a legal writ demanding a payment of $18,000+ for vehicle damage in a car accident. Both parties were fully insured and that amount should have been paid out but wasn’t. I think (hope) it has been resolved and shall explain at length at a later date.
The stress of caring for and worrying about my Joan is getting to me and I am forgetting things. I ordered a rare book about PNG through the state library but haven’t had the time to sit down and read it. It has to be returned tomorrow. I need to make check lists before I leave the house. A couple of days ago I somehow lost Joan’s wallet with all her cards and personal details. Yesterday was card cancelling day.

I want Joan back home but also want her to regain some strength so she is able to at least walk around with her walker.

Heavy night

Joan’s condition is deteriorating rapidly. We will soon have to let the Silver Chain bring in a hospital bed. Overnight we had to get up to toilet about five times without a real result. We both realise that there is little to void because she has eaten hardly anything, but the pressure is there.

I now know what the term respite means. I cannot really leave Joan alone to dash off to the pharmacy, or have a much needed haircut or go shopping for groceries. Joan’s sister Dorothy also has some respite from caring for her husband Mike and is going to use her respite to look after Joan on Wednesday afternoon. Some respite!

Mike has advanced Parkinson’s Disease and can be a very frustrating patient as he cannot speak well enough to understand what he is saying and he has a fixation of fiddling with technical stuff like phones, computers and TVs until they need someone else to come and reset them to work again. His favorite play thing is the Garmin SatNav device.

The Silver Chain service is excellent and we can call them 24 hours a day for either telephone advice or a call-out. The trouble is that the nurses are always different and we have to go through the question and answers routine and the review of the last visit before anything can happen. Never-the-less it is better than seeing a GP or the Oncologist or even being in hospital because these palliative care nurses have seen it all many times over and know what drugs and doses are best suited to each situation.

Photo of Joan just a few weeks ago.

The Silver Chain

Yesterday Joan had a massage. We are not sure it did any good, quite often a massage feels great directly after but fades after an hour.

The visit to the oncologist resulted in a change of medications for pain and nausea. He also arranged for the Silver Chain to visit in the evening. Whilst there Joan asked for the PICC line to be removed as it is no longer going to be used for chemo. Dr Ransom informed us that if the hospital removed it, it would cost our health fund $450 and he removed it in approximately 2 minutes.

The Silver Chain nurse arrived around 8.30pm and was excellent and in the hour she was with us gave us much more detailed info about how the different drugs work and the precise order in which they should be taken. Palliative care is just one facet of this wonderful free service. See here.

I have taken a different approach to Joan’s food intake. Instead of asking her whether she would like something I have been offering her a taste of something I have prepared and know won’t be too difficult to swallow; beef broth, sliced fruit, electrolyte ice blocks etc. Seems to be working!

The Colostomy bag she has had attached to her belly was supposed to be for only two or three days, but the fluid from her abdomen is still flowing into the bag at a rate of around one litre a day. It seems that it will be a permanent situation. I empty the bag about four to five times a day as it is quite small. When today’s Silver Chain nurse arrives she will change the bag.

Here is a link to a blog posting from a lady who lives/lived(?) in Tasmania. It is called The Silence of the Dying.

ACTIQ

Yesterday was busy. We had a 3pm appointment with our financial adviser and headed off a bit earlier to collect some painkiller meds at St John’s. I helped Joan shower for the first time since diagnosis. Even a simple shower is enough to tire her so much that she has to return to bed. We have decided to contact the Silver Chain and discuss what services we need for Joan to remain at home.

The medication is named ACTIQ and is a controlled drug which is supposed to be one of the strongest self-administered pain killers. Each packet contains 3 units (something like a small lollipop) which is rubbed into the inside of the cheek. It takes about 15 minutes to dissolve and in the initial tryout yesterday, worked for about 45 minutes. Each package costs $186.10 and we pay only $5.60 because the Oncologist is prescribing it as palliative medication.

The pain Joan is experiencing is in her shoulders and lower back. We are hoping that it is not bone metastases from the liver and just muscle pain. I have given her quite a few massages and they give temporary relief. She is having a Bowen massage session on Friday morning.

Later in the afternoon, Joan’s friend Juliet visited with a lovely beef casserole for us. She is aware that Joan is having great difficulty eating anything and I will enjoy the meal(s) and not have to tell porkies about how much Joan liked it.

The ongoing saga

Joan was able to come home yesterday. The abdominocentesis tube out of her abdomen was removed and a large ‘waterproof’ dressing stuck over the hole in her stomach. By the time we had arrived home the fluid pressure has forced a leak in the dressing and urine-looking fluid was running like a Queensland flood. We rang the Oncologist and he suggested we go to our pharmacy and get lots of gauze pads and change the dressing regularly until the flow slowed down.

After several attempts at stemming the flow we resorted to large incontinence pads. When Joan was in bed the flow slowed and the pad almost held the spillage overnight. This morning we rang the Oncologist’s office and the nurse/receptionist told us to come in immediately. The fix was to clean up the area around the hole and attach a small bag which can be emptied easily. There is a spare bag for me to use if somehow we damage the one stuck on Joan’s belly.
When Joan was getting the infusion of Human Protein (albumin) the nurse told her that each small bottle of 100ml was produced using approximately 30 blood donations. At last Joan saw some direct value in all the years as a blood donor. It will be interesting to see what that cost.

Human Albumin

When I left Joan this evening she was having a two-unit infusion of Human Albumin. See here.

The fluid drain is still in and the total is now over 5 litres. When the flow slows down to a dribble, the tube will be removed and if the Onco thinks she is strong enough, she can come home. She still has swollen feet and legs from fluid retention.

Joan has discussed the disposal of her quilting/sewing books and numerous lengths of fabric. Her plan is to offer them to her many fellow stitchers for the price of a donation to the Cancer Council. Her sewing machines will be sold.

This morning when I visited her, I firmly believed that she was not going to be able to come home again. She was agitated, in pain and had a ghastly pallor. This evening she is feeling and looking better and we hope she can come home tomorrow. This dose of protein should help. The shift during the day to a private single room also cheered her up.

Abdominocentesis

This morning we drove into Perth to the Public Trustee office to draw up a new will. We already have a will each, but our daughter Helen was the executor and we felt that it would too much of a burden on her and so gave the job to the Public Trustee. We were lucky to have someone on the inside at the PT and we had the will ‘drawn up, signed sealed and delivered’ in about 40 minutes. Our ‘insider’ is a delightful young lady who was a student of mine at Willetton Senior High. As proof of identity we took our new passports which have not yet been used. Joan suggested a trip to Bali just so that we could have our new passports stamped. I am not sure we will be able to manage a Bali trip.

After the Will, we drove to collect some computer gear from an Aboriginal organisation also in the city. The gal who is Manager there is also a very nice and has given me lots of good Mac gear over the years. Today I received a few keyboards. a couple of late model flat screen monitors and a nice iBook. At the moment I have a shed full of Macs ready to go to needy folks.

At 11am Joan was admitted into St John’s for an ‘abdominocentesis’, procedure to drain fluid from her abdomen. Her stomach and her legs and feet were very distended with the fluid retention. I just now talked to her and so far almost 4 litres of fluid have been collected and there is still much more to go. She hopes to be out tomorrow, but the oncologist suggests it may be another day yet.

Our love will sustain us

We saw the oncologist today and received the bad news we suspected we would hear.

My dear wife Joan has had little if any benefit from 12 months of chemotherapy and radiation. He told us that the tumours had grown and although she had had the best available chemo, it has failed to stem the onslaught. He estimates that she has around three months left.

She has a lot of fluid retention in her stomach area and on Friday she goes into hospital to have it drained.

The plans we had made for a couple of trips will probably not eventuate. We have lots to do in the weeks ahead. We both hope that in ceasing all treatment she gets well enough to enjoy our time together.

We hope that our love for each other can sustain us.