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2016-02-25 03:06:58 (UTC)

Ron's Health: Retrospect and Prospect on 28/3/'16

Part A.

I am about to enter my 8th month of dealing with pancreatic cancer. This ongoing and retrospective story, begun in late August 2015, can be read at several posts on this internet diary site. My battle with nausea is now largely managed; I am able to enjoy my day with some pleasure, although the deep feeling of fatigue-weakness is still a part of my daily experience. I can read more and write a little, but still not much more than a few pages per day.

A Community Nurse(CN) comes every day to give me a subcutaneous (SC) drug infusion by portable syringe driver(PSD). 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 wForlds, 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.

Occasionally the 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.

Part B:

I will quote below a recent report of decreased morbidity(death during an operation) and mortality(death following an operation) following palliative surgery for patients with "irresectable pancreatic head carcinoma roux-en-Y hepaticojejunostomy"(the name given to my operation back in early September 2015). This report prompted/ contained a review in one study of 126 patients (whose median age was 64 (range 39-90) years) who had undergone palliative biliary & gastric bypass surgery, another name for my operation.

The median hospital stay in that study was 17 (range 5-80) days. I have had 77 days in hospital by 8/3/'16. The median overall postoperative survival was 190(range 14-830) days. Late obstructive gastrointestinal symptoms occurred in 14 patients (11 per cent) after a median of 141 (range 21-356) days. I have now had 7 months of the 27 months of life in the case of the best postoperative survival rate, at least the best in that particular study with its 126 patients. In reality I have no idea how much more of life is on my cards.

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." This statement contains some of my thoughts.

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. With this terminal illness I am faced with this important subject every day. 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.

Part C:

In the hospital, palliative, & hospice care system that I now receive everyone is treated as an individual and the doctors & nurses have one overriding aim: to keep the person in question comfortable and give them the best quality of life possible. The CN and palliative care system(PCS) system is much more personal than the treatment I'd receive in the George Town Hospital(GTH). I also have access to an on-call doctor and/or a nurse at the GTH at night and in the day, respectively. I take several drugs which I have outlined at another post.

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. The Melwood Palliative Care Unit(MPCU) at St. Luke's Hospital in Launceston 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.

This system works on the principle that: "You matter to the last moment of your life, and we will do all we can to help you not only to die peacefully, but also to live comfortably until you die." This is at the core of the health and care system that I now enjoy as I go through this long illness/process. I will have to go into the hospital-or-care facility, like the MPCU or the GTH, at various times during my illness in the months and years ahead. Time will tell.

Part D:

I'll say a little about the use of a syringe driver(SD) in palliative care for treating nausea. This syringe driver is most frequently used in palliative care, particularly cancer care. I have had it used on my cancer since 1/2/'16. As I write this update on 28/3/'16 my nausea, as I say, has been successfully managed. This has been the case for at least the last month. Problems associated with this device, the SD, are also discussed with each visit from a Community Nurse(CN).

In the last 4 weeks a new butterfly needle was installed by a Community Nurse(CN) on 6 to 8 occasions. The cyclizine, the subcutaneous(SC) drug, came to be kept at the level of 100 mg; on 25/3 it went down to 90 mg resulting in more energy and less fatigue. Cyclizine is an antihistamine drug used to treat nausea and post-operatively following administration of general anaesthesia and opioids.

A butterfly needle is a short needle with a small diameter attached to a thin, flexible tube. The needle is flanked by two rubber wings that allow the phlebotomist(a nurse or other health worker trained in drawing venous blood for testing) to grip and move the needle with ease. The tube is attached to a rubber boot that attaches to the blood collection tube. This SC drug will have an increased dose should I experience any greater discomfort, pain or simple anxiety, or a deceased dose should I want more energy and still keep the nausea at bay.

Part E:

Chris and I had a visit with my GP here in George Town, Dr Tim Mooney, on six different occasions in the last month. On 9/3/16 he fitted me with a truss, and on 17/3 my wife and I decided in consultation with Dr Mooney that a week or so in the GTH would be a good idea, especially for my wife to get a rest from me. I still have little energy to write, read and edit my writing. Quality of life is, for me, found in these activities. In the end, though, just being comfortable and nausea free is at the centre of my experience of this much used term, 'quality of life.' I settle for whatever reading and writing I am able to do in a day. I will continue to update this post as long as I have the energy and health to make alterations to this statement on a daily basis.

Ascites, the buildup of fluid in the space surrounding the organs in the abdomen, is caused by cancer; doctors call it malignant ascites. Malignant ascites is most common in people with pancreatic cancer: it has come onto my agenda in the last week. People with ascites may experience the following symptoms all of which I have: abdominal swelling, sense of fullness or bloating, decreased appetite, ankle swelling & hemorrhoids. All of these symptoms are experienced far less now on 28/3/'16.

On 11/3 my wife and I had a consultation with my GP about the symptom management/palliative care of this ascites. I need to keep the amount of salt I eat to a minimum, and not drink as much water and other liquids as usual. I aim to drink 1 to 2 litres per day. I got a script for a diuretic which helps reduce the amount of water in the body. It is spironolactone, a potassium diuretic (water pill) that prevents my body from absorbing too much salt & keeps my potassium levels from getting too low. Spironolactone 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.

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.

I had no desire to go into the GTH but for my wife's sake it is necessary to do so. I will be discharged next Wednesday(30/3); for now I am enjoying day-time release. For now, too, I have to watch and wait and drink plenty of liquids as this illness progresses. Falling onto the floor is always a shock to say the least. It has been 3 weeks since I last fell to the floor. My stay in the hospital this time is about two weeks and I have not fallen down. I use a mobility walker.

Part of the services and care I receive is also available to my Carer, my wife. Chris has seen a grief counselor(GC) 3 times in February-March. The Department of Health and Human Services of the Tasmanian government Palliative Care provides this counselor. Grief and loss, although painful, are a very normal part of being human; however people suffering grief and loss can sometimes encounter difficulties. It is then that a GC is useful.

I have yet to take advantage of such a person who is a social worker as far as I know. Grief and loss, although painful, are a very normal part of being human; however people suffering grief and loss can sometimes encounter difficulties. Bereavement support is provided to the family & others who have a close relationship with the palliative care client registered with the Palliative Care Service(PCS). Bereavement support includes: individual support and counseling, family support and counseling, and referral to other support services.

One such support service is Calvary Health Care Tasmania at St Luke's Campus Melwood Unit(MU). It has spacious single rooms with an ensuite and fabulous views. They are tastefully refurbished to reflect a warm and friendly environment and include tea/coffee making facilities, microwave, bar fridge, flat screen TV and use of iPads. There is unrestricted visiting hours and friends and family are encouraged to spend as much time with the patient as both want, including overnight stays. A private hydrotherapy bathing suite is situated on the ward as well as a family room where patients and families can listen to music, watch a DVD or simply relax and have a cuppa. Time will tell if I take
advantage of the MU.

Chris also has contact with a palliative care nurse(PCN) who works with individuals and families facing a life limiting illness. PCNs cover many areas, work at many levels and have many different responsibilities. They work within an interdisciplinary team, but will often coordinate care in consultation with clients, their carers and other team members. Palliative care can be provided in many settings of care including homes, nursing homes, hospitals and hospices.

Part F:

This post was written over the first 28 days of March during which tiredness and weakness(much) and hernia discomfort(little) were my main problems. A truss, inserted on 9/3, has eliminated the hernia discomfort. I am sleeping-resting well over 12 hours each day and, for the most part, I am comfortable, pain free and have little anxiety. Ascites has become a problem I need to deal with as discussed above. After 2 weeks on the 2 new drugs mentioned above my ascites symptoms began to be well-managed.

I trust the above paragraphs give any interested reader a general but also a detailed picture of my present state of health in my dealing with pancreatic cancer.