Thursday 29 November 2007

Home from hospital

Just a quick note that I came home from hospital yesterday. I was in hospital 3 weeks all up.

I can't sit long at a computer for the time being. I am alive & I can walk & that's the main thing for now.

Many thanks to all the guys at PAH for looking after me for the last 3 weeks.

Hopefully more later.

cheers

Rob

Monday 5 November 2007

Countdown....

Surgery tomorrow. The countdown begins. I'll be spending most of the night setting up my house for my period of convalescence post surgery, which will be approximately 2 months.

My respiratory problems have eased up, moving up from my chest into my thorax. It's the top part of my chest that always seems to be afflicted with breathing problems, rather then my lungs. I still have a sinus run but not all that bad. My GP was unwilling to give me an antibiotic as he felt that the hospital would postpone surgery and blame him, so he's leaving it up to the hospital tomorrow.

Last week in pre-admin I was told I would be last on the list in the afternoon, to give the plastic surgeons plenty of time to finish their work. However when I phoned the surgical care unit this evening, for my arrival time, I was told 7:30AM. As I live on a bay island, that time is almost a physical impossibility. A quick check of public transport time-tables confirmed that. As I'll have to leave my car at home & no-one else to drive me (the only island taxi doesn't start before 6:00AM), I have to leave home, on foot, at 5:20AM to to catch the 6:20AM ferry. Catching the first available bus will get me in there at 8:00AM. The hospital wasn't very happy when I told them I could not get there any earlier. They know where I live. I told them these things in pre-admin. This was no drama in June with the biopsy surgery as to these issues, as the hospital made allowances as to where I lived. Maybe as the doctors originally had me scheduled for Tuesday afternoon they didn't worry to note this last week. It's Melbourne Cup day tomorrow.

In June, when I had the biopsy, they had me in at 8:00AM, only for me to to find out I was being operated on in the afternoon. I am diabetic and had no breakfast.... a recipe for disaster with hypos... the same again tomorrow. It's not good. Why can't they stick to plans and do things as originally intended in an organised, calm manner? The Australian public hospital system is very much in the media these days and at times appears to be in disarray. The hospital where my surgery is being carried out (Princess Alexandra - Brisbane) was having to cancel much surgery due to budgetary constraints as very much reported in the press, recently. I don't know whether that was why I have encountered some unusual situations since late September with doctors being non-committal on a range issues until last week, and thus the hurried nature of arrangements. The state's premier has since relented on the surgery ban and allowed the hospital more time to sort out its budgetary problems.

I encountered all sorts of administrative muck ups when I had an appendectomy (in a different hospital) a few years ago - appointments being mailed to the wrong address, getting me down to the hospital 2 or 3 times for the same thing only to send me back home again etc.

I must comment that the health system falls down in the area of administration and co-ordination as well as the usual range of problems affecting the medical professions. Attend to administration problems and communication problems, and the health system will run more effectively and a lot less expensively. This sounds simplistic, and is. It's a matter dear to my heart and I hope to blog more on this in the future. Doctors are among the most appalling communicators among the professionals I encounter. Back in 2000 I was seriously considering returning to studies in psychology with that in mind, as a thesis. But how to go about it? One might as well study how cats cross a road..... LOL. ;)

It's very much a mystery why urgent radio-therapy of a rapidly growing tumour, commenced more than six weeks after the biopsy. The oncologist told me it would be 2 weeks. Was it an administrative or medical decision? Then the previously mentioned cancellation of outpatients appointments making it almost too late for surgery?

My simplistic advice to the medical profession ... 'stick to plans, communicate & listen to your patients, but think outside the square when you have to guys, and check things out for yourselves. Rely on your own judgement rather than just accepting your fellow professionals..... they might not have looked too closely at that scan either ;) ..... LOL'

As they say laughter is the best medicine.. :) That plus effective communication goes a long way.

Most doctors are OK, but why do they work & communicate in such a harem scarem manner?

Again I digress.... let's hope all goes well and I move from being a cancer sufferer to cancer survivor.

See you all some time in the future :)

cheers

Rob.

Thursday 1 November 2007

Surgery on Tuesday

Surgery to resect the tumour has been confirmed for next Tuesday. I am not looking forward to it. However it is necessary for my survival.

The tumour swelling still appears to be subsiding. I experience very little, if any, sensation of swelling or hardness in the tumour area. Occasionally I experience hardness or lumpiness in the popliteal area, below the tumour, which I have experienced in the past and mistaken for enlarged lymph nodes. It's now easy to see how I missed noticing the tumour until it became vary obvious.

However the groin/buttock region of the same leg, which is supposed to be free of disease, continues to be the main source of discomfort in any activity involving sitting, especially driving (and also my flight simulator pedals LOL). The upper thigh is obviously enlarged and has been that way since 2002. It continues to become harder from the sensation perspective and hardness has also spread to my backside. Along the way one doctor told me he could feel an illusive lump, and suggested a lipoma, and another said there appeared to be a fatty growth in the groin/buttock but was mystified as to what it was. Lymph nodes in that area frequently become painfully inflammed. A couple of doctors carrying a pre-admin examination noticed the swelling back in 2001 and enquired about it. Yet surprisingly none of the doctors, in recent months have commented on it. While I have mentioned to many doctors in recent months, I have not pushed to issue for reasons mentioned below. I leave it to them.

I had a trip to the hospital yesterday for the presurgery routine, i.e. sessions with nurse, anesthetist, pharmacist and doctor. I have experienced periods of sudden fatigue (usually late afternoon or evening), chest tightness, sinusitis and chest infection, since the end of radiation treatment, which I imparted to the doctors yesterday. Indeed I am experiencing breathing difficulties while writing this morning and find myself gulping for air; a combination of infection & fatigue. I experienced similar afflictions in May & June following respiratory infection & flu from late March through to early May. These symptoms appeared to clear in July and indeed following this year's severe winter flu bug, I was much better after that illness than before. Keflex treatment following the biopsy may have assisted also. The doctor was concerned yesterday, but my chested sounded ok when both the anesthetist & doctor listened to it. The doctor decided to run with the anesthetist's decision, so surgery goes ahead. I've made a GP appointment for tomorrow to further check.

As mentioned above, this happened to me in May & June this year, and my lungs were apparently clear even to myself, yet I still experienced breathing difficulties and a pressing sensation in the top part of my chest. At that time I was worried that the cancer may have spread to my chest, however the PET scan cleared me of that, and as related above, these afflictions disappeared from early July through until late September. Thus the possibility of cancer in the chest ceased to be a concern.

Earlier illnesses in 2001 left me afflicted with a condition diagnosed as chronic, multiple location adenopathy, inflammatory rather than neoplastic. This condition still appears to exist, and nodes such as the axilla nodes appear to come up with the slightest wheeze or sniffle and become painfully inflamed, likewise in the groin. I also have a lymphatic condition in the right neck & breast that has slowly developed since 2001. This condition may be related to a similar condition in the groin/femoral region of the right thigh. This appears to be a constant slowly developing condition. These are generally non-painful but do become sore in the presence of obvious infections and very obviously with the consumption of alchohol. I do wonder, on occasion whether these difficulties are caused by nodes pressing in on other tissues.

Interestingly the anesthetist told me yesterday they had difficulty inserting a tube down my throat back in June whether that's related to the above I do not know?

I do tell doctor's all these things. I've imparted most of the above to various doctors during the course of recent months. They are briefly startled, but usually it's not what I'm seeing them about, or not on their plan, and, after briefly pausing, continue on their merry way. I don't push the matter for fear of coming across as a hypochondriac. The medical situation has been confused due to new doctors in the last 4 years, as I have moved away from my former suburb and GP who knew much about these matters. Kidney/UTI symptons re-occur with alarming regularity on the left side and chronic epididymitis persists on the right.

Anyway I've digressed a bit - hopefully the sinus & accompanying breathing problems will ease up over the weekend.

cheers

Rob