Sunday, July 28, 2013

Last post

Jon Hilton. 13/06/1959 - 27/07/2013

Jon passed away quickly and peacefully surrounded by his family at 3.30pm on Saturday July 27th at the Epworth Hospital. Jon slipped away to the sound of his mother's voice.

Jon's enduring passion was the development of an accessible e–health network.  His battle with cancer allowed him an insiders view of the system he was working on and his final months led to significant developments in his understanding of the importance of the patient's role within  e–health.

There will be a private family ceremony. In  lieu of flowers  please donate to the Fred Hollows Foundation as a fitting tribute to Jon's life and legacy.

Monday, July 08, 2013

Wonders of modern chemistry part 18

Back in hospital again because of a high temperature. This was on the 4th of July, last Thursday. I had been feeling progressively worse over the previous week or two.

Should have noted all that in the blog and I probably would have picked up more warning signs earlier.  Don't believe for a  minute that this will make me change my ways though.

Anyway,  I felt chilly and a little sweaty so checked using my in ear thermometer,  38.3 degrees, well into the danger zone.  Packed some things and off to the ED at Epworth. Getting used to the procedure. Certainly the admission to ED was simple enough - clinical triage and one form to sign. Under observation, blood tests,  broad spectrum antibiotics given intravenously through a cannula even though I pointed at a port in my chest installed for the purpose of making it easier to stick stuff into my venous system.

A few hours in ED then off to the ward. Four beds, noisy,  lots of coming and going.  Didn't sleep well there and not making much clinical progress either - still getting temperature spikes and not improving much. Off my tucker. Somewhere in the middle of that they discovered my port and wanted to know why this was not used, then started using it.

Denise, my very competent and patient wife and carer put me on a waiting list for a single room.  I didn't escape room 27 until Saturday evening. I am now in comparatively idyllic surrounds with the IV pump setting the rhythm for many aspects of my life.

I am gradually improving.  This kind of thing is fairly common in patients like myself with biliary stents. Expect to escape in the next couple of days and to be well enough to attend HIC.  My appetite is gradually improving from a very low base,  so the signs are good.

Thursday, May 30, 2013

Wonders of modern chemistry part 17

Chemo again yesterday. Went to Tiamo in Carlton for lunch on the way back from the hospital. Had a (pretty ordinary truth be told) veal parma. Should have had a spaghetti  bologna.

Yesterday afternoon and evening I felt very washed out and tired. I rested most of the afternoon in my recliner, dozing quietly and had a small dinner of silver beet, some leftover pork and a mash of celeriac, parsnip and swede.

This morning I feel more energetic and with less pain, which is great. I am gradually becoming aware that the abdominal pain is related in some way to the quantity of food that I am eating, With time delays as things pass through my digestive tract, it is a bit difficult to be certain about this association. Perhaps some experiments are in order. I guess I should maintain a food diary to give me some data to work with. I will investigate some apps to see if there is anything that will make this less tedious than it sounds.

It is also possible that the reduced pain is a sign that the chemo is working.

My weight seems to have stabilised at around 81-82 kg, which is probably about right given that I am not doing any form of heavy/aerobic exercise.

cdmNet is still working very well, and the care team are all putting their notes into it, so far I have a good collection of input from myself (of course) the GP, practice nurse, surgeon, oncologist and dentist. I have a good relationship with the pharmacist, so they will be next :-)

Wednesday, May 22, 2013

Wonders of modern chemistry part 16

Hi all,

I am still doing well so not a lot to report. I have visited the surgeon, who is very pleased with my progress and put some notes into cdmNet, had another chemotherapy session earlier today, and visited the oncologist who is also pleased enough with my progress to reduce the dose of painkillers and Dexamethasone and also put some notes into cdmNet.

Juice of the week is carrot, tomato, celery and lemon.

Chemo again next week, further ahead is a visit to an exercise physiologist, and I am starting to prepare for my visit to Adelaide in July for the Health Informatics Conference, which I am looking forward to.

Friday, May 10, 2013

Wonders of modern chemistry part 15

Chemo on Wednesday the 9th of May.

Feeling OK - slight increase in pain but nothing unbearable. Some general discomfort in abdomen but not really nauseous. No sign of oedema this time.

All in all, feeling OK. eating well still, appetite is quite good.

Made a batch of carrot, silverbeet, ginger and pear juice in the new slow juicer - surprisingly drinkable.

cdmNet is working very well - the oncologist has put in a note, which impressed the practice nurse and GP no end. I have been putting in notes, appointments and measurements also as a patient. I had a conversation with the practice nurse about cdmNet and how it is working.

It seems that the care teams that they are working with are not well engaged with cdmNet. This is understandable, as they have probably received very little in the way of training and support, and Precedence cannot provide unlimited support resources for the hundreds of thousands of allied health and other health providers that are out there. This can be rectified with some effort, but it does point to a key role for Medicare Locals in assisting with the awareness and uptake of initiatives such as cdmNet.

Barwon Medicare Local have showed us the way to do this, and have run a series of events that have done a lot to help raise the awareness and skills of health professionals in their region. Hats off to them for their efforts here.

The practice also has a key role to play here, after all we don't want to interfere with their relationships with local providers. We (Precedence and Medicare Locals) should be aiming to help practices maximise the benefit of cdmNet by assisting them to make the most of their relationships with care teams.

The conversation also highlighted some gaps in training materials and approaches. We need more material to assist patients to make the most of cdmNet. The practice nurse can play a role here also, but they were not aware, for example, that a patient could enter progress notes into cdmNet. Anyway, here is a link to the training videos that we do have, and this includes a patient module:

Sunday, April 28, 2013

Wonders of modern chemistry part 14

So, another long gap between reports. I'll have to give up apologising :-)

Since last time...

  • 6/4: Developed oedema (fluid retention) which is a known side effect of gemcitabine treatment. Spoke with oncologist who recommended I see a GP and get a prescription for diuretics.
  • 10/4 - 12/4: chemo at Freemasons day oncology, then to Freemasons hospital (highlight was being posted in a post maternity hotel style recovery room) for observation post chemo.
  • 17/4: Visited another GP who uses cdmNet with a view to creating a cdmNet care plan for myself in collaboration with the GP and staff. Discussed diet and other options with him and met with practice nurse. They are happy to cooperate.

A week later, the real action starts:

  • 23/4: Severe nausea and vomiting in the middle of the night. Temperature of 39.6 (peaked later at 40.9!) Went to Epworth emergency at 5.30am. Onto IV broad spectrum antibiotics and lots of tests. Admitted after 6 hours in ED recovery room, not feeling very well at all.
  • 23/4: Another CT revealed possible blockage in biliary stent and also a possible liver abscess. ERCP indicated to address stent issue, ultrasound and liver biopsy indicated for abscess.
  • 24/4: ERCP showed blockage in stent at the lower (bowel) end. Another stent inserted inside the original, this one is a covered type rather than open mesh.
  • 25/4: Based on CT, an Ultrasound guided percutaneous drainage of liver abscess was recommended, 6 ml of fluid withdrawn and sent for pathology testing.
  • 26/4: Blood test results indicated e-coli as infective agent, sensitive to penicillin. Antibiotic changed, several IV infusions. Pathology on fluid from abscess showed nothing in particular - apparently this is not unusual.
  • 27/4: Discharged, with oral antibiotics and feeling much better. Appetite is back. Yeah!

I am due back at the GP on Wednesday and need to draft my care plan before that.

Next chemo session is also Wednesday - was originally due the week before but delayed due to above complications.

Overall, I feel like some progress has been made here - and I am definitely feeling much better. Let's see how the next round of chemo goes...

Thursday, April 04, 2013

Wonders of modern chemistry part 13

Sorry - long time between posts. Has been a bit of a rough fortnight or so.

I had about the same reaction to the second round of chemo as I did to the first - it took a little longer, but I ended up in hospital extremely dehydrated and on a drip. The oncologist and I decided to delay the next round of chemo while I regained hydration, and some strength and we decided to change the chemo regime as clearly the Folfirinox regime was not agreeing with me.

After a one week delay I had a round of Gemcitabine yesterday. This will be repeated next week, then one week off. This cycle (two weeks of Gemcitabine, one week off) will be repeated for a yet to be determined time. If I regain enough strength we may give  Folfirinox another try - I think part of the problem was that I was not quite in condition to take it, having not really recovered from surgery for the first round, then not really recovered from the first round for the second.

So far, I am reacting OK to Gemcitabine. I had started to regain some appetite prior to the treatment, and so far it has only been slightly affected - I had some breakfast this morning and a little lunch.

Thanks again to all my well-wishers. I am currently feeling much better - I think the increased dose of painkillers is helping there...