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2016-03-28 02:27:50 (UTC)

Ron's Health: 28/3/'16 - 5/4/'16

This post was written for the period beginning on 29 March 2016 during which tiredness and weakness were my main problems. I am sleeping-resting well over 12 hours each day and, for the most part, I am comfortable, pain free and have little anxiety. Readers interested in my experience of pancreatic cancer(29/8/'15 to 28/3/'16) need to access several other posts at this site.

After some 2 weeks in the George Town Hospital(GTH) I was discharged on 30/3. Another chapter of this convalesence has opened-up with weakness my main problem. Occasionally a community nurse CN or a nurse from the GT pathology unit administers a blood test to assess the state of: my electrolytes, my iron levels, protein levels, neutrifils, and ESR(erythrocyte sedimentation rate). Readers wanting to know more about various terms/words I use in this statement should google their meaning. This post is just an outline, a general statement, as much for me as for any reader. There is much fine detail in this account that I have left out, but readers will get a good general picture of my recent health both at this post and other posts at this online diary site.

There has never been more help available to allow a person with a terminal illness to have the kind of care he or she really wants at the end of their life. Of course this is only true in some of the developed world. With this terminal illness I am faced with this important subject every day, although the whole question of death and dying is of no concern as long as I am comfortable. I have no fear of death. All I want is comfort.

I write this statement partly for my own record and partly for those interested in my health, my current experience with this terminal illness. I send this account to others when it seems appropriate to do so. I'm sure some will find it too long, too many words and, in this case, readers are advised to skim, scan or just stop reading when they lose interest.

Decisions about what we want to happen at the end of our lives are among the most personal, and the most important, we'll ever make. Yet all too many of us put off discussing this most sensitive of subjects until it's too late. As a result people often don't get the end they would want. They also do not write about their experience and share it with friends who, for the most part, have little idea what the person in question is going through. I have given much thought to what you might call "the end game."I would like to die in the hospital or auspice unless all I have to deal with is the weakness I now have to deal with. This statement contains some of my thoughts on the process of death and dying.

There are a range of facilities I can draw on should that prove necessary when I need to go into some place other than my home for special care. Ainsley House in GT and the Melwood Palliative Care Unit(MPCU) at St. Luke's Hospital in Launceston are the main two. The latter is the most attractive and, when my wife needs a rest from the constant care she provides to me, I may get a referral from one of my Hospic-At-Home nurses for me to go into the MPCU. The GTH is also available if I want care outside my home. In this case the referral will come from my GP. My wife and I decided that, on 18/3/16, I would go into the GTH for about two weeks to give my wife a rest and some good sleeps, sleeps she has not been getting in recent days in her caring role. I will get some hospital care in those 2 weeks. I came out the GTH today.

On 30/3/'16 I was discharged from the GTH and so begins this next chapter of my life with pancreatic cancer in the 8th month. On 3/4/'16 I stopped taking spironolactone which is used to diagnose or treat a condition in which a person has too much aldosterone in your body. Aldosterone is a hormone produced by your adrenal glands to help regulate the salt and water balance in your body. After 2 weeks on this new medication my symptoms have become less intrusive. My cyclizene went from 80 to 90 mg via the syringe.

I also take a medication for diverticulites and have done so since 11/3. This drug is called loperamide hydrochloride which has inhibited peristalsis of the intestinal wall musculature & intestinal contents. It has reduced fecal volume, increased fecal bulk-density and, I trust, helped to minimize fluid and electrolyte loss. That visit with my GP on 11/3 also showed that my BP was low and I needed to increase my intake of protein. I have fallen down on the floor several times in the last few months due to low BP. We discuss many things with my GP over the weeks: my levels of discomfort, scripts, palliative care at MPCU and the GTH for me, cyclizine, trusses, falling down-and-low BP.

A Community Nurse(CN) still comes every day to give me a subcutaneous (SC) drug infusion by portable syringe driver(PSD). This device often presents problems. When this is not possible I go to the George Town Hospital(GTH) or the pathology unit of the GT surgery for the SC infusion. This has had a significant impact on my nausea management and fatigue; indeed I have no significant nausea to speak of since mid-to-late February although my fatigue and weakness, as I say, still accompanies my day. Chris and I are also able to discuss with this CN any problems we are having in relation to our psycho-social worlds, in relation to each other, in relation to our GP, as well as the general management of this cancer. Nurses have become the main group of people in my life.

While I am comfortable and weak, Chris is sometimes at the end of her tether worrying about me. I then worry about her worrying. But we are hanging in there.