Still Alive........

..... If not totally well. The title is slightly tongue in cheek. I hope to start posting more frequently on this blog.

Normality is slowly returning, though it will be many months before my leg is healed internally. I currently have to wear a pressure garment on the leg, which I am now quite used to. I have been told I have to wear this for approximately 6 months to 2 years.

The leg is slightly infected and being monitored by hospital doctors via outpatients and treated with anti-biotics. There is one small wound being reluctant to heal and oozing a little bit of puss & serum, where one of the surgical drains exited my leg. I have been told that if it continues beyond the next couple of weeks I might have to go back into hospital and possible further surgery.

I am quite mobile and can drive ok. Commuting by public transport, particularly bus, can be quite arduous, especially some of the Veolia buses which don't allow much leg room forcing me to sit back on the seat causing pressure on the leg. The back of the leg is hard & swollen & will be that for some time, though there has been gradual improvement since I left hospital. It's like sitting on a lump of cardboard with lumps of hard rock embeded in it.

In January I have a few outpatients appointments scheduled, including opthamology (the surgery took its toll on the eyes - 5 hours lying on my belly under GA during surgery - detached vitreous gel); oncology (yet more radio therapy coming up); orthopedic reviews & scans going into February.

I probably won't know the outcome of all this until March/April 2008. (Though I would hope to have an indication by the end of February.)

I would describe cancer as an ordeal to be endured, rather than a battle.... at least that's the way it's been so far.

I still haven't blogged about my stay in hospital & surgery as I intended to. I may yet do so.

It's New Years eve and I would like to wish my readers a happy & prosperous 2008.... take care.

cheers

Rob.

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

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.

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

Radiation therapy still working.

Even though radiation burns had largely healed and swelling subsided 2+ weeks ago, stinging and burning is still happening, indeed it is worse these last 3 days than it was last week. It appears to develop & flair up overnight.

I am still treating with aqueous cream, along with vitamin E cream & tea tree oil on a daily basis. The burning appears to develop overnight. I could swear that the mass has still further shrunk since the MRI scan two weeks ago.

I was also told on Tuesday that the tumour was now 12 1/2 cm on its largest axis. It was previously scanned as being 15 cm. I also think it may have further grown by a couple of cm between between the original MRI scan in June and the commencement of radiotherapy in August. I have read of liposarcomas 13 inches (33 cm) being resected.... that is big!!

The tumour is now nice & soft too. I barely notice it while travelling on the ferry. Actually the main area of discomfort is in the groin region of the thigh, however I think that is caused by a different disease process. As I keep saying..... more later ;) LOL.

cheers

Rob

Surgery....

On Monday I received a call from the hospital asking me to come in and see a doctor on Tuesday morning. I was just given the doctor's name and outpatient's ward number. A quick scan of the phone directory revealed the outpatients ward focussed on ENT, head & neck problems & plastic surgery. I had been previously told by the orthopedic doctors that a plastic surgeon would be required due to the large size of the tumour. The tumour's resection will leave quite a large hole.

I saw the plastic surgeon doctors on Tuesday morning and, at first glance, it appears that I am in for quite an ordeal. To pack the wound the doctors will have to remove muscle & skin tissue from elsewhere and transplant to my leg. I was told that a muscle will be removed from my back, below the shoulder, along with its blood supply & nerve to be transplanted to my leg. The doctor told me that this should leave me a bit fatigued from time to time in my right arm.

I have to comment that the whole situation is somewhat bewildering. Presently, apart from some swelling in my right thigh and a bit of pain from time to time, I can walk & run ok & generally feel good, though a bit fatigued from the late afternoon onward, due to the aftermath of radiotherapy; in other words less 'gas in the tank'. Though when the fatigue does suddenly occur I do have to lie down to avoid mischief to my body. I also have some respiratory symptoms, possibly as a result of radio therapy.

Overnight I am going to be transformed from a reasonably well person into a partially disabled person, though hopefully most function will eventually return. I have been told that it will take 8 to 10 weeks to recover from surgery.

While all this might seem like an ordeal, surgery will save my leg. In fact this surgical process is called 'limb sparing' surgery. A few years ago when one of my GP's suggested I had a lipoma in the same thigh I carried out an internet search on lipomas, as I didn't have a clue what a lipoma was. Lipomas are benign fatty growths that resemble tumours. On that occasion I read that malignant lipomas resulted in automatic amputation. Lipomas are very similar to liposarcomas.

On Tuesday the radio-oncologist, who previously treated me, was visiting the head & neck clinic in the same ward and had a bit of a talk to me and a couple of med students he had with him, explaining all this too. He later had another talk with both myself and the plastic surgeons explaining the history of the treatment of sarcomas which, until recent years was immediate amputation... thus the term 'limb sparing surgery'.

Surgery is tentatively set down for 6 November, Melbourne Cup day.

In a sense it's a shame that this cancer should develop at this time. When the orthopedic surgeon appeared reticent the other week I carried out Google search on the alternatives and discovered that there have been at least two drugs trialled with varying degress of success on liposarcomas. In one to two years time, automatic resection may be a thing of the past too. I'm still intending to blog a little bit more on liposarcomas & their treatment.
[Edit: Further reading on this subject indicates that while new treatments are being trialled with success, resection still appears to be the primary initial option.]

Cancer is such an obnoxious & insidious disease. That mutating fat cells in my leg show grow into such a large and fast growing blob is incredulous.

One has to be philosophical at this point in time to avoid being overwhelmed by all this. More later.

Cheers

Rob

The Path Ahead....

At long last I saw the orthopedic doctors. As I mentioned in my previous post, time is almost up to resect the tumour to gain maximum benefit from radiation therapy. The doctor soon realised that, and now it's all rush organise surgery, which I was told will either be next Thursday (18 Oct) or the following Tuesday (23 Oct). They have to organise a plastic surgeon too, as the resection of the tumour will leave a massive hole in my thigh. I face an 8 week recovery period following surgery. So I will be out of the loop for a while.

I'll have quickly carry out a bit of preparation too. This time I was told I would be in hospital a week and 8 weeks before I can drive. Thus I'll have to organise a few things such as deciding about care for my cat. If I'm only in hospital a week, a neighbour can probably feed him. Knowing the hospital I could be in hospital any amount of time from a few days up to 3 weeks. In my experience of them they never plan anything before hand. The hospital will only plan my after care the day before discharge, community health services etc. Living by myself has caused problems with aftercare in the past, e.g. I should have had community ambulance transport home after my biopsy, they didn't think to ask or plan before hand. I made it home awkwardly & painfully by public transport on that occasion. I've been raising these issues every time I have spoken to a nurse, social worker or doctor. It's difficult to organise oneself if one cannot get some clear answers about what confronts one. We'll see. Hopefully things will turn out better than they seem at present.

Earlier this week one of the radio-oncology doctors called and told me that my post treatment MRI results revealed the treatment had been moderately successful but the bad news was that I appeared to have a blood clot. A vein ultrascan was organised and thankfully was clear.

It's a great pity I have to go through with all this. Radiotherapy combined with resection does seem to be the standard treatment. In a small number of cases amputation transpires. That had been my main concern.

Anyway it's dinner time for me... I'm running late & this time around hopefully I'll follow up with more posts on the weekend.

cheers

Rob.

Grumbles? What grumbles?

I closed my last post by saying 'more on my grumbles on the weekend'. Well a bit more time than the weekend has elapsed and I don't want to get too negative just yet. That can wait LOL.

The radiation burns are greatly improved. The leg does still sting & itch at times and does get heated during the night. The lymphedema is greatly improved though does still build considerably from time to time. I can now walk around without limping. Today I went across to the mainland to do a bit of shopping, the first day of commuting since my last outpatients visit to the hospital. The leg did become a bit stiff & swollen behind the knee.

The hospital gives patients undergoing radiation therapy an aqueous cream to apply to the area being irradiated. During the worst of the post treatment burns I found it to be generally ineffective. Fortunately I found some unused skin creams that belonged to my late mother which I did not throw out after she passed away. Both of them were natural care products. One was based on macadamia nut oil as its primary component and the other on Calendula oil from the marigold plant. The macadamia nut product was really soothing and both of these combined with the aqueous cream really worked well. I've since added vitamin E cream and Tea Tree oil to the mix. I take a couple of applications of each staggered at different times of the day.

Today I was disappointed to receive an outpatients department letter re-scheduling my appointment with orthopedic oncology until 19th October (originally on the 12th of Oct). The whole point of the outpatient's consultation is to plan surgery. The five week's radiotherapy was to make the tumour easier for the surgeon's to remove. I was told that surgery usually has to be carried out 4 weeks after the end of radiotherapy but six weeks is ok. Given that RT finished on 12 Sept, 4 weeks is the 10th of October and 6 weeks is 24 October, an OP consultation on 19 October leaves little room for planning both for myself & the surgeons if the resection has to be carried out in an optimal time frame. I am starting to become concerned about this.

I see my GP on Monday. The letter from the OP department advised my to discuss any concerns I may with my GP and I will do so.

As to whether the radiation therapy reduced the size of the tumour is difficult to say from my perspective. I would say yes it has shrunk a bit. However the very variable fluid swelling on my leg makes it difficult to say exactly how much. It certainly is much softer & has changed shape. It has definitely shrunk on the outside of the thigh. However as it continued to grow on the inside of my thigh between diagnosis & treatment it's difficult to say whether it has shrunk as there is much fluid swelling there and it still burns from time to time. The largest dimension mentioned in any of my medical reports was 15cm on its longest axis.

I'll blog a bit more on my concerns or what I term breakdowns in communication, in coming posts. I've also read a fair bit on liposarcoma and its treaments and I intend to write a bit about that too. I've been intending to post a few links to pages of interest too.

As usual my hobbies & reading greatly help my morale & well being.

cheers

Rob

Radiation Treatment & Aftermath

I'd love to say the five weeks of daily radiation therapy went without hitch..... well it nearly did.

The skin behind the knee broke on the second last day of treatment & pain & swelling started. Since then the area behind the knee and inside of the thigh have become red & peeling. To say it is painful is an understatement. The fluid swelling, probably lymphedema, is bad in the early evenings and this, combined with the cracked skin makes life very uncomfortable. I'm limpy Dan at the moment Lol. I've learned to crab walk up and down stairs & have to slow my self down & pace myself accordingly.

At this time it's beginning to hit home that I actually have cancer and one's future might not be too bright. At the moment I'm coping well psychologically, indeed it sometimes puzzles me when people start getting pessimistic, though I'm beginning to understand. Cancer is such an insidious disease!!

I had my first consultation with an orthopedic surgeon today, since the end of RT. To say he was pessimistic was an understatement. This has left me quiet perplexed & angry since it differs from opinions & advice given in earlier consultations with orthopods & the radio-oncologist. At the same time it has caused me to take more interest in the disease. These guys don't seem to know much when one asks them a question about one's illness. More on my grumbles on the weekend.

I intend to post my observations and experiences on all this more frequently, and also some information on liposarcoma.

Rob

So far so good!!

Just a quick update as I haven't posted in a while. Today will be day 20 of my radio therapy treatment and all is generally well so far. The area being treated is a little bit red, sometimes a bit itchy and occasionally stings, but not really what I would call troublesome. I have another six treatments to go including today's, then a bit of a rest, review and then planning for the next stage, surgery. I would guess surgery will probably be sometime in October.

I am quite pleased with myself as I have to commute daily to & from hospital which can be quite a journey... only just over an hour getting there but sometimes 3 hours returning home depending on timetables. Treatment itself only takes a few minutes. The staff of the radio-oncology unit are friendly & professional. The reason I am pleased is that the nurses said I would never manage to commute back & forwards due to the side effects from the treatment. However one of the doctors told me that being in the leg treatment will not cause too many side effects. I was very fatigued last Friday but freshened up over the weekend.

I have a slight cold developing and I hope that does not mess things up. I have been spending the time I have at home with my hobbies.

Some Clarity

Things are a little bit clearer for me now after the planning session for radio therapy today.

Actually the radio oncology clinic differs from some of the other outpatients and radiology clinics I've attended by actually seeing me at the appointed time.

First I was measured up, positioned & CT scanned so that the radio oncologist can plan map out the radiation doses for different parts of the tumour. I ended up with 5 little tattoos on my leg and pelvic area so that the RT staff know how to position me when I receive treatment.

RT begins in two weeks as I mentioned in an earlier post. I have to decide where I am going to stay or whether to commute daily. It appears that fatigue is usually a problem after a couple of weeks of RT.

I still can't get used to all the glum faces when people find out I have cancer or when doctors become conscious of the size of the tumour. The expression on their faces..... I feel quite ok just now and the few weeks rest have greatly helped.... life goes on and at least for the time being no need to be glum.

Also thanks to the people of have sent me emails or PM'd me on some of the FS forums, for your kind wishes.

regards

Rob

Update

I might as well start posting... hopefully more frequently.

The last couple of weeks have been quiet, with no contact with the medical profession :) - the lull before the storm perhaps. Prior to that I had a PET Scan on my torso and a CT scan of my chest & abdomen. My GP contacted the hospital who informed him that PET scan had revealed that the cancer had not spread from the leg to my torso. (No mention of my neck however, where lymph nodes persist - the rest of my body was not scanned either.) I haven't received any information on the results of the CT scan. I am assuming that it was negative or I would have been told... I hope :)

Today I have a planning meeting at the radio-oncology clinic to plan my radiation therapy. Hopefully I will have a clearer picture of what lies ahead.

One of the radiation nurses did provide an answer to my questions over the phone last week. I have 5 weeks of radiotherapy starting on 8th of August. This is to make it easier for the surgeons to remove the tumour as the radio therapy more clearly defines the tumour. The RT also kills the periphery of the tumour, hopefully to make re-occurance less likely. It is a large mass, approximately 15cm according to one of the reports.

Following the 5 weeks of RT, I have been told I will have a 3 week break to recover prior to surgery. I have been told I will be in hospital from anywhere between a few days to 3 weeks. Then will follow 2 months of recovery & rehabilitation. It's the latter part that really worries given that I live by myself on Macleay where healthcare facilities are not as good as on the mainland. It will probably be late December or early January before I am able to return to work.

I'll post a bit more in the next couple of days after the planning session.

Beginnings

I have recently been diagnosed as having a large liposarcoma in my right thigh. This blog is intended to be my personal account of my trials & tribulations while undergoing treatment for this tumour.

I have to say I am somewhat bewildered about all this and feel sort of weird writing a cancer blog. The blog will evolve in an unplanned way. My writing will be pretty much spontaneous, writing as I feel like it.

It has only been a week since I was given the results of the biopsy on my leg and informed that I have to go through radiotherapy and surgery, involving at least 4 months of treatment and rehab if everything goes well.

Cancer has been suspected by doctors in the past. I went through a period of illness in 2000/01, mainly severe infections & sepsis. My primary GP of that period was adamant that there was an underlying cause. He would tell me "A septic e. coli infection explains most of what you have been through, but not all of it. I do think there is something else.... possibly some sort of cancer trying to happen such as leukemia or lymphoma, but not showing consistently in your blood tests. The most likely cause is a small tumour somewhere.....but where to look for it?..."

Maybe this is the formerly small tumour that the GP had in mind... now very much grown.

Anyway enough of the past... the present and the future is what counts.

Rob