Another resource for the patient journey

Way back in 2004 I posted to this site my impressions of surviving an "Ivor Lewis" surgery.

Thanks to another survivor who has been clever enough to find some notes written by a nurse recalling what needed to be done for one 71 year old patient being nursed through the aftermath of this intensive surgery.

Just go to http://www.ciap.health.nsw.gov.au/hospolic/stvincents/1993/a07.html

While the documentation is from 1993 I suspect that the process is still in use and will continue to provide a guide for nursing staff and at the same time provide a considerable help to those who are about to undertake the journey for the first time.

I can recall that my biggest fear (after the fear of death of course) was how I was going to survive the impact of the surgery and what it was going to be like to wake up after the operation with all the tubes and things hanging out of me.

I could not imagine what that must be like and I have to say that I was kept awake at night with all sorts of nightmares about the then unknown.

While I have the view that it is better to confront the unknown and learn as much as possible about it to enable that confrontation to be somewhat useful and directed this may not be the view of others who read this site.

If you are one of those who prefer to just rely on your doctors and the other staff at the hospital where you are going to be treated to know what they are doing and to do it well - then do NOT read the documentation.

If however you are a control freak - like I suspect I am, then it's probably a good idea to read and get to know as much about what it is that is likely to happen to you and what you can look forward to in what people refer to as the "patient journey"

While this is merely the write up of just one person's journey - perhaps by reading it the fear can be reduced and the reality more easily confronted. There is no guarantee that your journey will be the same or indeed similar - each person's situation is after all so very different.

The choice is yours - but do let me know what you think - if you feel like it of course!

Canabis and its impact on YOUR health!

Thought you could avoid Lung Cancer by not smoking tobacco and being 'cool' and rolling a joint instead?

New Zealand researchers are NOT going to make your day! The ABC reports that:

Smoking a joint is equivalent to 20 cigarettes in terms of lung cancer risk, scientists in New Zealand have found, as they warned of an "epidemic" of lung cancers linked to cannabis.

In an article published in the European Respiratory Journal, the scientists say cannabis could be expected to harm the airways more than tobacco as its smoke contained twice the level of carcinogens, such as polyaromatic hydrocarbons, compared with tobacco cigarettes.

The method of smoking also increases the risk, since joints are typically smoked without a proper filter and almost to the very tip, which increases the amount of smoke inhaled.

The cannabis smoker inhales more deeply and for longer, facilitating the deposition of carcinogens in the airways.

For those of us who live in the ACT, are part of the baby boomer generation and who already have one form of cancer this news is grim. If the research is accurate then we will soon have to compete with many others for the already relatively small number of services available in the community.

Of course this is a very egocentric view of the world.

IPTAS or Interstate Patient Travel Assistance Scheme

I wonder how many people in the ACT are aware of IPTAS?

IPTAS or the Interstate Patient Travel Assistance Scheme provides assistance to permanent residents of the ACT towards travel accommodation expenses incurred when referred interstate for medical treatment that is not available in the ACT.

What you need to do to avoid making any errors is to ASK your referring doctor to get a copy of the form off the web and fill in his or her bit of the form BEFORE you leave the surgery after they have made a referral!

Then take the form WITH you to wherever you have been referred AND make sure you get the doctor there to complete his or her bit of the form AND GIVE IT BACK to you.

Keep all the receipts for travel and accommodation and other expenses you incur in the process of getting medical treatment and then when you are back home, complete YOUR part of the form and send it on WITH the receipts to the contact that is listed below.

While the contact officer only works part time she is wonderfully helpful if you have any difficulties with the process, so if needed contact her!

Do NOT expect your doctor to know about this process or to tell you about it. Yes they do know but they are probably too busy to remember it all so use the old Boy Scout motto and be prepared then you can most effectively help yourself!

Full details of eligibility and allowances are in a form called IPTAS claim form and instructions - July 2007

This is available for downloading from the IPTAS site

IPTAS Guidelines 2007 provide information about the criteria and administrative requirements for the ACT Interstate Patient Travel Assistance Scheme.

In particular, it provides detailed information on:

• The eligibility criteria for ACT IPTAS
  
• The requirement to refer to the nearest treating specialist and the referral process for ACT IPTAS
  
• Situations where approval of an escort under ACT IPTAS may be appropriate, including a list of the reasons where provision of an escort may be appropriate,
  
• Situations where approval of air travel under ACT IPTAS is appropriate, including a list of reasons that may make air travel appropriate and
  
• details of the process for obtaining approval for a patient/escort to travel by air.
  
  IPTAS Guidelnes are available for downloading from the same site as the document above and of course you can contact the IPTAS administrator,

Community Health Intake,
GPO Box 825
CANBERRA CITY ACT 2601

Tel: (02) 6205 3299
Fax: (02) 6205 2611

Email: IPTAS@act.gov.au

PET SCAN NEWS

For those who have been waiting with bated breath for the news here it is:

An FDG PET-CT was performed from the base of brain down to proximal femora. A low dose contrast CT was also performed for attenuation correction and localisation.

SCAN FINDINGS
When compared with the last PET scan from 08/10/2007, there appeared to have been slight reduction in the extent of increased FDG uptake in the right infraclavicular and right upper paratracheal region - and stable uptake in the left retrotracheal region corresponding to soft tissue thickening on the CT scan. There has also been no significant change of low-grade uptake at the previous surgical site in the mid -inferior mediastinum and gastric pull up region.

There was no new focus of increased FDG uptake to suggest interval disease.

CONCLUSION
There has been a slight reduction in the extent of uptake in the right. intraclavicular and right upper paratracheal region since the last PET scan from 08/10/2007, more in keeping with benign reactive/inflammatory uptake following previous treatments. There is no evidence of progressive disease or new focus of FDG-avid disease seen to suggest definite recurrence.

I don't know how others will read this - but I read it to mean that I have an explanation for the pains I have been suffering from over the last few months namely inflammation of the scar tissues left by the radiation therapy.

If the pain means that I can continue to my next birthday and perhaps beyond then I know that I will have to make a change to my lifestyle. I will have to study the writing of people who are masochists and learn to actually enjoy the pain - it's the least I can do to continue to find ways of enjoying life!

Of course this does NOT mean that I am not trying to find some ways of coping with the pain. In the first place I have sought and received advice which suggests that I need to adjust my work station and so I am being fitted with a chair that has every fancy doodad that you can think of including a pump up lumbar support. I am also attending a physiotherapist to ensure that whatever CAN be manipulated to reduce or remove the pain is being done and over and above that I have taken the liberty of using old fashioned methods for treating pain which is of course the hot pack option.

I will let people know how this is going.

In the interim I have to say that while I am quite uncomfortable some of the time I am also really glad to be alive and so try very hard NOT to complain. Well OK at least not complain too much!

Update

Have you ever had one of those days which turn into a mini disaster and then seem to come good?

Well that was last Friday.

I was driven up to Sydney to have the PET scan done and of course the night before the great adventure, I had more pain and suffering on the right hand side than I have had for some time.

With considerable effort, heat packs and analgesics we managed to get things right and somehow I managed to survive the three hour trip to Sydney. We then had to wait for another few hours until I was finally given the contrast medium and then sent off to have the scan. This was of course followed by yet more time to get rid of the radioactive medium and have a 'snack' consisting of a salad sandwich and a small container of apple juice!

Remind me to tell Australian hospital staff that the Meat Board has a point when it advertises "feed the man MEAT" after fasting for quite a few hours I am afraid that a salad sandwich with a slice of tomato, cucumber, a bit of lettuce and a hint of beetroot is NOT the most filling or satisfying of meals!

By this stage, I think it was around 2:30 pm and I was feeling hunger pangs which frankly, a salad sandwich did nothing to allay!

The doctor managed to come out and tell us that we could go and I received a CD with all the data on it for the doctors back home with an assurance that a report would go to the referring doctor.

Given that even with faxes this would probably not happen until Monday, at the earliest, it was back to Canberra for us!

We did of course stop off to visit family while on our way home and this actually managed to see us back in Canberra at some ungodly hour like 8:30 that night.

All in all a VERY long day.

Today, Monday, I have contacted the hospital only to be advised that my Radiation Oncologist was visiting a town some hundreds of miles away for the day and would no doubt return the following day. I asked that she be left a message which would alert her to the fact that the PET scan results should be available to her and that I was sitting at home anxiously awaiting the news of the results.

So with some luck and good management I will be able to get back to my readers - no doubt tomorrow, with some news about what the PET scan has shown and some idea of where this will leave us for the future!

Meanwhile I do have some excellent news!

I went to see the Physiotherapist again today and we discussed my symptoms and my aches and pains and I asked that he give some special attention to the thoracic lumbar area and we found that some manipulation of T7 seems to alleviate some of the pain.

I have to admit that I am sceptical as to how long this relief will last - but I am being an excellent patient and doing nothing untoward that could possibly have a negative impact on the relief that I am feeling following this session of physiotherapy.

I have also managed to obtain a report from the OT that has visited my home and we have discovered that gaining some comfort on the home front is NOT an inexpensive exercise.

She has suggested changes to my office set up and also some changes to my bedroom and lounge room arrangements. I can't really comment on the value of the suggestions as I first have to go and look at and then try the various pieces of equipment that she is suggesting we purchase.

The price of some of the suggestions does however have an impact I have to admit.

Being not well is neither for the faint hearted or those who are generally less than adequately well heeled.

I have visited some of the web sites where she has suggested I look for equipment and all I can say is that being pain free is NOT going to be a cheap exercise!

Still that's life these days I guess. You make money during your working life - ostensibly to enjoy retirement and then spend most of what you have put aside to just stay alive and mobile!

More as things develop.

In the interim dear readers I have to tell you that with the work done by the Physiotherapist today I am feeling like a new man AND I am going to enjoy it for however long it lasts!