Rob's Cancer Journey

Life goes on

2008-12-28T10:25:00.004+10:00

Firstly, I realise I'm a bit late, but I would like to wish all my blog readers all the best for the festive season and a prosperous and happy 2009.

For the time being I'm regarding myself as sarcoma free until the medical profession tells me otherwise. The only effects on my daily existence, from what I've been through, are a great deal of fatigue, and the messy ulcer on my backside, which takes a lot of work keeping clean. I do have other health issues which I will follow through with GP's etc. , one of which may transpire to be sarcoma when investigated. I hope not!

I had a quiet Christmas at home. A trip across to Victoria Point for last minute shopping on Christmas eve left me very fatigued with a very tight chest on top of everything else. I did manage to catch up with my relatives on the phone and thank them for their presents. Hopefully I'll have a bit more energy after new year.

Anyway life goes on and I'm not planning on wasting too much time and have started working on my hobbies again. 3D Modeling is certainly worth keeping up as it may help with future income or at least supplement such. It is relaxing though a bit sedentary.

The weather here is very hot at the moment and this region, South East Queensland, certainly has had a very active storm season. I'm longing for cooler less stressful weather. Last night it was 24C° (75.2°F) at midnight + humidity. It was 2:00AM before I would have fallen asleep. I slept in until 10:00AM today (Sunday) LOL.

Anyway I'm hoping for a sarcoma free year in 2009, and no more surgery I hope.

cheers

Rob

Good News - Margins Clear

2008-12-19T16:56:00.004+10:00

I went along to hospital today for my post discharge outpatient appointment. The good news that the margins of the resected tumour were clear. This means that they likely have removed all the sarcoma with none left behind. Most of the resected tumour comprised of dead tissue which indicates that radio therapy was successful. I was given a copy of the pathology report and surprised to read that the resected tumour was 150x100x100 mm ie 15cm x 10cm x 10cm.... whew some size!!

The tissue on my backside has collapsed somewhat and there's a bit of an ulcer which I am told will take about 3 months to heal. In the meantime I've got to put up with a bit of a discharge until it does heal. This doctor did not restrict me in terms of activities unlike other doctors. The registrar in the ward did not want me to sit until the discharge had stopped. Todays doctor did the same last year ie told me all was ok when the others considered the wound was infected. All the others had me on antibiotics due to the wound being indurated.

The bad news is that the doctors are expecting sarcoma to re-occur in the future. My next outpatients review is in April. There are three chronic disease hotspots currently on the go, which I've mentioned ad nauseum to doctors. They either ignore or dismiss out of hand. Though I would have had a lymph node biopsy were it not for the sarcoma developing in May. The tumour just removed, was initially dismissed out of hand by a GP and the ortho oncology surgeon in charge of my case as unlikely in April & May of this year. Neither of them could initially feel the mass. However the MRI proved that a lesion was present. My groin/crotch/genitals area on the right side tells me that some disease process is ongoing and not cleared by the Sarcoma resection. Likewise my right neck and right ribs breast area. I'll post more on this subject on my sarcoma insights blog.

cheers

Rob

Home From Hospital

2008-12-13T09:13:00.006+10:00

I'm home at last from hospital after being there for three weeks following surgery to resect the sarcoma. It feels great to be home indeed! Hospital generally went well. The nursing care was excellent. Hospital food was ok to great, though there were a couple of naff meals and of course nausea and the occasional fever tended to put one of one's food from time to time. I enjoy sleeping in my own bed and the less regimented existence.

On the medical side there were a few surprises. I woke up in ICU after the operation. This was due to concern that I might have a heart attack, which the doctors thought may have been a possibility. I was told that the stress echo cardiogram revealed some ischemic damage. Given that I've had an abnormal ECG since December 2000 and that I had a possible cardiac event at that time, and I was deemed to be free of ischemic damage following a stress test in August of that year, the damage probably occurred then.

It was amusing when I started to come to in ICU. Things were a wee bit weird at first. I had a somewhat vivid dream that I had been offered a contract by a leading flight sim publisher at the same time I was beginning to surface and began to struggle with the respirator tube going down my neck. Somehow my sub conscious mind translated this as haggling over contract details with publisher's represenative. Some of the medication they give you during and after surgery does give one very vivid dreams. When I eventually came to and realised where I was I was greeted by a very Irish nurse, full of cheek and blarney, and quite re-assuring. BTW I hope the dream comes true. I do hope to be available for contracts once I recover, both in my normal day gig and 3d modeling.

On the medical front news was broken to me that the doctors had encountered some surprises during the operation. The tumour was very large and had also attached itself to the bowel and the urethra at the base of the penis. This meant a small part of my bowel had to be removed and the rectum was nicked too. This was one of the reasons I was in hospital so long. The doctors had to be sure that the rectum was robust enough for normal usage and that I remained free of infection as the wound is right next to the back passage. I was told the sarcoma itself was quite large, about the size of a small rock melon.

On the bad news front the ortho oncology surgeon thinks sarcoma is likely to re-occur as it is metastatic, and he possibly did not get it all. He told me I may have further radio therapy. If it does re-occur he has to weigh up between a collostomy and treating me with trabectedin/yondelis. I would certainly question why a collostomy as he would be removing part of the bowel as a precaution. People have survived much worse than I have without resorting to such radical methods. Given overlapping urology symptoms, swelling and adenopathy, if all are sarcoma related I've had sarcoma for a long time and it's already spread to where ever it's going to spread to.... probably small benign looking conditions that suddenly decide grow. I tend to think that radiotherapy or antibiotics in February, provided the trigger and the signal to cause sudden rapid growth of the sarcoma between March and August. Something triggered growth during February/March anyway. I'll post more on my speculations and medical history in my other blog Sarcoma Insight when I'm able to sit a bit more.

Right now I have normal mobility and generally feel ok. I do wake up with body wide aches and pains and have a temperature at times. I have to avoid sitting upright for prolonged periods. I'm not sure how long for. I've known people who've had surgery for urology probloms being told to avoid sitting for long periods for 3 months following surgery. The wound was fairly massive, a 10cm hole takes a lot of healing and filling. My backside is shrinking and changing shape on a daily basis. I've written this small peices at a time, taking frequent breaks and access the internet througout the day from my notebook lying on my side, though it does get rather tiring typing like that. In the meantime I'm enjoying reading a few books and delving into my cd collection.

Many thanks to those who've sent me their best wishes or offered their prayers. I'm quite moved and very encouraged by them. I've still a couple of people to reply to and will do so in the next few days.

thanks and best wishes

Rob.

Surgery looms

2008-11-15T19:53:00.002+10:00

Surgery is now only 3 days away...really two actually. My pre-admission session was on Wednesday. It comprised the usual briefing and check over by a nurse, doctor, pharmacist and anaesthetist.

The anaesthetist was concerned that my ECG was showing as abnormal and had been for quite a few years going on my chart. There also had been inconsistency with chest x-ray reports which report normal left ventricle size and some which correctly report ventricular hypertrophy. I also was told during my admission last year that I had suffered ischemic cardiac damage during that admission. As anaesthetists don't like operating without knowing what's happening inside a person an echocardiogram was hastily organised. As the hospital itself couldn't organise an echocardiogram before surgery next Tuesday I was checked out by a Qld University Research group looking to identify at risk (of a heart attack) patients who are having surgery. The test I was subjected to involved injection of a chemical similar to adrenalin and also atropine to increase heart rate to the point of stress. Laid back Rob's heart was unfortunately rather reluctant to stress out and beat at a fast rate. The target rate was 138 I did reach 136 when I experienced pain and the test was stopped.

I have had a few episodes of pain primarily under the left shoulder blade combined with an unusual sensation in the top left chest. The unusual sensation is similar to mild heart burn with a sensation of pressure. I sometimes experience a painful shoulder and hand. Yesterday's test proved that the pain is real and is cardiac. At the end of the test the heart burn sensation was quite fiery and the left shoulder, left arm pit, side of chest and hand were painful too. Fortunately it did not last long. Hopefully I'll find out how I faired after surgery.

Today saw one of my rare forays to the mainland with my car via the barge. I should do it more often but it's expensive. I've been busy shopping and catching up with housework so I'll be able to cope with the aftermath of surgery.

I hope to blog again before surgery.

cheers

Rob

New Blog

2008-11-10T12:08:00.004+10:00

I am in the process of creating a new blog called Sarcoma Insight. That blog will focus on my personal insights as a lay person and sufferer of myxiod liposarcoma and will also look other health issues such as diabetes and infection. I have had a significant medical history most of this decade culminating in these two sarcomas. I am hoping that some of my experiences and insights may help others understand and research this dreadful disease. I also hope to translate relevant medical issues to a form that other lay persons such as myself can easily understand. These articles won't be of wiki standard however. I'll also post a link here on occasion when I write an article.

This blog, Rob's Cancer Journey, will continue to document my ongoing, and hopeful survival of this illness.

Surgery soon.....Very mixed feelings

2008-11-10T08:27:00.003+10:00

It's been a while since I last updated this blog. Generally I am feeling good apart from a bit of pain & discomfort sitting and of course I still have a bit of a legacy following the resection of my previous sarcoma. There's a little bit of uncertainty as to one's future and infections are very much trying to get me at the moment.

I call the respiratory infection that frequently crops up my 'resident bug' as it follows a similar pattern and symptoms every time. It has occured many times over the last four years, usually when I've been fatigued or overdoing things e.g 18 hour days 3D modeling, several days at a time. (This was mainly in 2005/06. There has been no danger of that happening in the last 18 months). I usually recognise the onset of symptoms and rest before it gets a hold on me.

However radio therapy, it's side affects such as fatigue, and the cancer have weakened me somewhat and I am very succeptable to infection. I appear to have a permament low grade infection in my upper chest (possibly lungs - I can't feel them). The infection starts in my chest and works it way up to my throat and nasal passages, the opposite of normal infections. Likewise symptoms of Kidney/UTI occur in conjunction usually on the left side, and work their way down. Eventually affecting the groin and area of sarcoma. I tend to think it's some sort of opportunistic bacterial infection that diabetics are succeptable to, such as psuedomonas, which I have had in the past. Bottom line is I'm improving on a daily basis and just have to remember to rest.

Right now as I write this I feel very good!!

Radiation therapy also affected bowel function.... bringing new meaning to the phrase "...the runs".... very little warning indeed, causing a bit of extra laundry LOL. Thankfully I was at home when these things happened. Such as life with cancer. Hopefully that's over for now.

What's been happening......? Actually quite a lot. The radiation therapy still appears to be working. The tumour appears to be still shrinking and softening day by day. It's a bit sore but not too bad. It's massively itchy for some reason. The cancer has been re-staged by scans including MRI, CT and PET. The ortho oncologist told that I appear to be clear of other tumours. Which really should be good news but possibly not, given the situation I mention below.

I have to say I'm never 100% convinced, given my medical history, other symptoms and that the current sarcoma remained undetected despite scans last year. Conditions such as collapsed lungs have been initially missed on chest CT scans in the past. I was shown the MRI which was very sharp as to detail. The tumour is very smooth and round and still a wee bit larger than I would like given that it is now going to be excised. I have no qualms about the MRI scan as long as it has been closely scruntinised for other tiny spots.

PET scans however, depend on the uptake of glucose by cancer cells and can easily be affected by a number of factors. I've noticed other patients being given valium injections to relax their muscles to improve the resolution of the scan. Even mild exercise prior to the scan can affect resolution as can exercise or exertion the previous day. I only had 2 hours sleep the night before scan. Whether that would affect glucose metabolism and scan resolution I do not know. The whole scan process appeared a bit rushed compared the previous one. The main reason for my doubts was that I was told the previous PET scan back in May/June was very clear and showed multiple hot spots but they weren't going to worry about the others other than buttock for the time being. These spots have somewhow vanished!!??

The reasons for these concerns are that prior to restaging the doctors told me that if I had spots anywhere other than the buttock I would be treated with Yondelis rather than going straight to surgery. Yondelis has yet to be approved in Australia and is only allowed to be administered on compassionate grounds, if the sarcoma has metastized or inoperable. Given it's proximity to the anus, being close to the skin, and the possible consequences of surgery it is almost borderline as to whether it would qualify for compassionate grounds possibly even without spread. Anyway Yondelis is not to be for the time being and surgery it is.

The date for surgery has been set for November 18. I have yet to be told how the surgery will likely affect me or how long I will be in hospital. I guess it depends on how surgery goes and what they find and have to do. Given that I only had 15 radiation treatments and normally this type of sarcoma usually has 25 at that hospital, I was hoping that they could reduce the tumour further given that there is a bit of radiation leeway. However that is not an option according to the surgeon. The radio-onclogist had been hoping to shrink it to a size that would not leave much of a scar. Whether he was further consulted I do not know. The ortho oncology surgeon has the attitude that it has to come out regardless and that is that! .... and no point in waiting. One has to go along with it:(

I guess my attitude is - I think the process causing sarcoma has spread already (my right neck and breast are very dodgy and also possibly left lung). I was right about this last time with the emergence of the groin/buttock sarcoma. Why be crippled by surgery and go through this all again when a little bit more perseverence, double checking and consideration could possible produce a different outcome.

Interestingly I was made to sign a surgery consent form in ortho-onclogy outpatients the other day which is unusual. This usually occurs in pre-admission and sometimes even on the day of surgery.

Everything is being rushed just that little bit too much.

The surgeon told me that I would be in hospital between four days and a week then qualified by saying '..about the same as last time." Last time I was in hospital for 3 weeks followed by 3 months recovery and rehab. Everything is so vague and non commital and makes it very hard to plan.

Hopefully another aspect of 'last time' won't be repeated as I suffered ischemic cardiac damage during admission and a partially collapsed lung. It was only due to the plastic surgeons doing their rounds the following morning and insisting that I be checked out that these were detected, some 24 hours after the event. The staff of the orthopedic ward didn't initially bother report or check me out when the collapse occured. Hopefully things go better this time especially in the area of communication and follow through. Memories of last year returning .... mmmm ....LOL

Hopefully all will go well and my pessimism is unfounded.

cheers

Rob

The Battle Continues

2008-10-20T09:33:00.008+10:00

I certainly was correct in using sarcomabattle as the subdomain title of this blog, and last week certainly lived up to the title. I haven't been so persistently ill, physically drained and depressed as I was last week. I've had my share of illness in the past including a period of severe fevered ilnesses earlier this decade, but nothing as persistently oppressive as last week.

It was most likely a consequence of radio therapy. Fatigue, depression, pain and malaise are known possible side effects of radio therapy. Since radio therapy finished at the end of September I've been finding I have much less 'gas in the tank' as I usually have, with intense fatigue arising at some time during the day, occuring anytime from 10:00 AM onwards. Sometimes this manifests itself as intense yawning drowsiness and other times my chest is absolutely heaving and straining with fatigue and I have to drop what I'm doing and lie down to avoid a heart attack. This type of fatigue can occur very suddenly without any warning, which I find very alarming. These affects combine with diabetes and infection which always seems to be around in low grade and at times not so low grade forms. I've also had many diabetic 'hypos' (low glucose) in recent weeks which also strain one's body. I've had to reduce some of my diabteic medication as a result. One cannot forget all the pain either - incessant at times which greatly adds to any fatigue or oppression. I experienced similar fatigue episodes from February to April following a radiation booster for the previous Sarcoma in February.

This particular sarcoma, on my backside, has been painful for many months as I've written in earlier blog posts. Radiation therapy causes inflamation and tissue burning in itself, adding to any pain caused by disease. I had fifteen treatments of radio therapy this time around. After a few days matters became quite painful and I was prescribed Endone which was later upgraded to a combination of Ocycontin and Endone both of which finished last week. Withdrawal effects from this medication could have contributed to last week's events too. Fortunately pain levels have greatly subsided to be at minor annoyance level most of the time with occasional inflammatory flare ups. I take Panamax for the inflammation and have no desire to return to the heavy duty pain killers at this time. Radio therapy treatments were also punctuated by a break due to the effect on my skin. I had two weeks off in September. Hence treatment did not finish until 30 September.

For many years I also have experienced a recurring respiritory infection with identical progression and symptoms, usually when my body is at a low ebb due to other factors, such as other infections, overdoing things, not getting enough rest etc. This also reared its ugly head in the last couple of weeks. I tend to think it is some opportunistic bacterial infection such as psuedomonas due to the similarity of symptoms. I have had a severe psuedomonas infection in the past, which was never treated with the correct antibiotics, as the doctor at that time did not want me to go to hospital. As I've learned since that diabetics are particularly prone to psuedomonas infections and I can recall reading that pseudomonas is the most common cause of pneumonia in diabetics and that pneumonia is the most common cause of death in diabetics (pneumonia was in my father's case). Thus I would say that pseudomonas can be deadly to diabetes sufferers. Very few doctors that I have encountered are aware of this. They should be. I hope to blog further on pseudomonas in a seperate post.... just for interests sake.... (hypochondria or what? LOL).

In previous posts I've made mention of my belief that there is a strong element of infection involved in the development of these sarcomas. I have had continual problems in my right neck and chest and also left kidney for a number of years. Will these be the next spots for a sarcoma to develop? Doctors had been observing elusive lumps, tissue hardness and a fatty growth in the right thigh/groin/crotch/buttock for many years, which appeared be associated with earlier septic UTIs, yet last year couldn't see anything amiss until the latest Sarcoma started growing. The orthopedic oncology surgeon who was in charge of my case could not believe it when the current sarcoma was detected this year. He told me when this occurs it is usually a seperate occurance rather than a spread and it then keeps occuring until the person dies, usually a few years down the track. I tend to think that going on my past medical history the basis of these sarcomas formed and spread many years ago, becoming aggressive in the past two years. Again I hope to write more on these possibilities in a future blog post.

Returning to the battle - Last year I learned a new trick when after 2 months of persistent chest infection matters were climaxed by a winter flu bug and fevers. My temperature reached 39.5° C, and having been caught out in the past with fevers which exceeded 41° C, started to give contemplation to calling the ambulance, given my prior medical history and also the sarcoma. I took two panadol and rather than lie in bed and endure the fever, forced myself to get up out of bed and started to tidy the house and do some vacuuming just in case matters got worse. (I'd hate to end up in hospital and leave an untidy house LOL.) Anyway 1/2 hour later my temperature dropped to 37.2°C and I felt not too bad. The fever and immune system reaction caused by that flu also rid me of the persistent chest infection. Last week given the oppression of my symptoms I realised I would be in trouble if I didn't fight them. Thus on Thursday with only two hours sleep and despite the massive fatigue and occasional fever I spent a few hours working on the yard and general tidy up. I had to pace myself and punctuate with breaks, but we got there in the end. By Saturday I had largely recovered, though I have to be wary of sudden fatigue and still have the persistently runny nose that I've had for a number of weeks.

To survive all this is very much a matter of balance between activity and rest. Make sure one gets the appropriate rest and to force oneself into activity if one senses oneself succumbing to oppressive symptoms, provided one is able to of course. Also I'm finding it important not to spend to much time on any one activity and to consistantly vary activities. I've just about used up my sitting on bum at a computer time for the day and it's still only morning.... a brief rest, then some reading, music and house work..... fun times eh?? LOL.

It was difficult to see a doctor last week given that one has to make an appointment ahead of time and one was too ill to do much travelling. I did have to attend Ortho Oncology outpatients on Friday, but they didn't even ask how I was.... just arranged a scan and an appointment for next Friday. They are veering from their earlier announced plans..... more confusion and frustration.... the medical profession... !!!!. Ever heard the expression like herding cats? .......Yet another future post on my current medical encounters & frustrations.

Of course all this has put a dent in my computer based hobbies such as 3D modeling, though I did manage to squeeze in a bit of work yesterday on the Sopwith Snipe for Flight Simulator X. I had put it aside for a couple of weeks. I've alsdo dropped notions of Fokkers for a few weeks at least LOL. I still hope to be able to release the Snipe prior to surgery though it may not be as complete as I would like.... That depends on the medical plans and how I am likely to end up after surgery. If a quick recovery is likely then I may leave the Snipe and finish it more completely after surgery.

Time for a break and then on with the day....

Cheers

Rob

Radiation Therapy

2008-08-25T09:28:00.004+10:00

Radiation therapy for the most recent sarcoma mass commenced last Thursday. This time around I will have 15 treatments over a three week period followed by a break and then a MRI scan. The radio oncologist is hoping to shrink the sarcoma so that it can be removed without requiring plastic surgery. I gather that these sarcomas usually require 25 treatments, however given the location of the sarcoma and being difficult to treat (buttock/anus) he doesn't want to do anymore than required. I'm guessing that surgery will be mid October if this series of treatments does its trick.

The tumour is now quite large. It's larger than my hand with my fingers spread out... I guess about 10cm. It's growing up the side of my bum crack and pushing across and also spreading across the buttock underneath my hip. Pain is a bit of a problem, though it is managable about 60% of the time. It appears to flare up from time to time and will be extreme for 2-3 days before subsiding. I guess it depends on one's activities. Sitting for anything other than a short time is no go. Going to the toilet can stir things up too. I clean the skin mainly with aqueous solution and was also using tea tree oil prior to treatment. I've stopped the tea tree oil while undergoing radiotherapy. I am managing on moderate pain killers at the moment, though the doctor says I may eventually have to be treated continually with morphine. I'm hoping to avoid that. Once radiotherapy is complete I will no longer have to travel and that may not be necessesary. Last time I had radiotherapy pain didn't really start until the second last day of treatment, but then became acute for 2 weeks. With only 3 weeks this time, it might not be so bad. However the sarcoma is in a sensitive place.

Many thanks to those people who have sent me emails and also PM's in various forums, (especially Brad - I hope all is going well with your GIST treatment). Everyone's emails are greatly appreciated.

I hope to keep this blog a bit more update than I have been. I have heaps more to write however I have to get myself ready for today's treatment.

cheers

Rob

More Hospital Sojourns

2008-07-01T23:04:00.002+10:00

I thought I was going to have a bit of a respite from trailing into hospital until radio therapy planning. This week I've a couple of scans lined up at hospital on different days. A CT scan of my chest tomorrow and an ultrasound scan of my neck on Thursday.

Pain and comfort wise I'm having a bit of a mixed up time. Yesterday (Monday) was almost pain free during the day. However last night I had a tough time of it having my sleep disturbed by pain many times. Most of the pain was on the right side of the body - thigh, buttock, groin, chest and neck. My neck felt as if it had been punched. It will be interesting to see what the scans reveal, if anything.

It's quite scary that many of these symptoms have been on the go for as long as 6 years, possibly 7 in the groin and lower thigh, yet many of them have been dismissed as little consequence by the medics, then suddenly a dirty great sarcoma grows in the space of a few months. Going on my symptoms I still think infection has driven the whole thing and may still be on the go. There's a strong link with UTI symptoms, inflammation and the eventual developement of these sarcomas. Maybe an outside chance of lymphoma, particularly Hodgkins given some of my symptoms? (Pain in lymph nodes on the consumption of alcohol - though the node pain is present without having consumed such in recent times.) Pain has been very bad in my lower regions and thigh all day today :( One uncomfortable dude, LOL.

Rob

Myxoid Liposarcoma - again

2008-06-27T16:49:00.006+10:00

I've now received the verdict. Myxoid Liposarcoma has been confirmed by both biopsy and the PET scan shows a hot spot for the area concerned. However the real bad news is that the Ortho Oncologist thinks it is a seperate instance of liposarcoma rather than a spread of the original. He told me it could even have started in the groin/buttock region and spread to the lower thigh. I was told that the prognosis for this type of liposarcoma is poor and that it keeps on re-occuring in different parts of the body until it is no longer able to be treated and then one dies. He told me that I won't die in the short term but will be very lucky to last ten years and most likely about five years. They are going to treat this type of sarcoma as a primary sarcoma with radio therapy followed surgical removal. Going on observations of my own symptoms in the affected regions, over a number of years, I tend to agree it is a seperate occurence. Other hotspots of disease over the years include my spine and my left leg. I still tend to think some sort of infection has set me up for or caused sarcoma.

Myxiod liposarcoma is a vile disease. The doctor described it as a malignant slime the suddenly develops and grows in various parts of the body.

I did ask about Yondelis/Trabectedin and initially the doctor was somewhat confused. However a couple of oncologists were close at hand one of whom new about it. In Australia it is only being given on compassionate grounds and Newcastle Hospital is the only center in Australia trialing it. He said it might be do-able if sarcoma re-occurs after this treatment, but we'll see and cross that bridge if and when we come to it.

The radio-oncologist then saw me. He told me treatment would be similar to last time. This time I'll have 15 treatments over 3 weeks and then a MRI scan to see it has shrunk small enough to allow surgical removal without having to have plastic surgery. So more ordeals are ahead. I was informed that there is currently a waiting list of 4 to 5 weeks before radiotherapy can commence. It is unfortunate that there was a 3 to 4 week delay in organising a biopsy as treatment would then be commencing next two weeks if it had occured on time.

The doctors also apologised for the delay in organising the biospy. It was something that should not have happened and I was told they will investigate to see what went wrong with the system and why the resident's request was not actioned and followed up. The doctor I tried to contact was on holiday and my calls were not passed on to another doctor. Anyway we're moving forward again.... a pity about the above delay in biopsy though. :(

Pain is a bit of an issue at present. I see my GP early next week. Let's hope he can assist. In the meantime Panadol and nurofen taken together seem to assist. However they do wear off after a couple of hours. The bus trips to and from hospital today were absolute agony.

Anyway it's time to reflect. There are lots of things to think about. I guess the main issues are quality of life in the long term and the best way to really enjoy life in the short term. I can think of many things LOL. :)

cheers

Rob

A few Sarcoma links

2008-06-27T05:19:00.002+10:00

I'm up bright and early on a rather cold June morning (winter in Oz) getting ready to go into to Brisbane for my outpatient's appointment. I just dropped by the Sarcoma Alliance forums to gain a little insight into current sarcoma treatments and I noticed a post on the faces of Sarcoma. The thread posted a few links which I followed through and found to be quite moving.

I'll post more on this later. In the interim here are some sarcoma links.

http://sarcomaalliance.org/Main.html
http://www.sarcomaalliance.org/cgi-executables/anyboard.cgi/anyboard9/forum/-=ab=-/index.html?cmd=retr&vf=aW5kZXguaHRtbA%3D%3D
http://www.facesofsarcoma.com/
http://abc-survivors.net/sarcoma_cause/main.php
http://liddyshriversarcomainitiative.org/

Rob

Getting Ready

2008-06-26T20:28:00.002+10:00

It's the 'big day' tomorrow, when at last after 4+ weeks of waiting, I find out what is confronting me and the future possibly holds. I have to say it's been a long week so far. Today I mainly spent tidying up around the house, putting everything away and ear marking what I have to throw out around the house. I want to be prepared for what ever lies in front of me. I also did some shopping in Cleveland. The early morning was spent working on terrain for a CFS3 enhancement project. I want to get my little part right before any treatment disrupts such. The latest batch of terrain is rendering as I type this.

Anything is possible..... it's a pity this happening now. There are new treatments such as trabectedin/Yondelis which appear to effective against liposarcoma being trialed as well as other new chemo based treatments. I'm dreading major surgery which is quite on the cards....... :( Yondelis has also been trialed and used on compassionate grounds in Australia. Whether I would qualify I don't know.

Roll on tomorrow.

Rob

An unfortunate anniversary

2008-06-25T17:34:00.002+10:00

It's one year and 2 days since my first post in this blog. I had hoped to be clear of cancer by now. Alas it was not to be. In early April 2008, 2 days after the radio-oncoligist shook my hand and congratulated me on being a cancer survivor, I felt what was then a small lump which I hoped was a hemoroid. Since then it has grown quite large. A case of here we go again......

I still don't know exactly what the mass is. I've been told it is most likely a re-occurence of liposarcoma going on the MRI. As I've posted before Friday is verdict day. Anything is possible. I'm assuming there will be quite an ordeal ahead so I might as well enjoy a few days of peace and quiet while I can.

This blog will be my main blog for a while until I know how things will evolve. I'd still like to pursue hobbies and pastimes such as 3D graphics and virtual aircraft creation. However I'd guess sitting will become progressively difficult, (not mention going to the toilet). Pain wise things vary greatly on a day to day basis. Some days are almost pain free... others level 5-6 pain for several hours. There appears to be an element of infection involved, with both pain and massive itching at times. The left buttock is affected too from time to time.

Rob

Biopsy

2008-06-19T16:34:00.010+10:00

I meant to post about this on Thursday, but for some reason blogger didn't post it even though I thought I'd pushed the right buttons.

On Thursday afternoon I received a call from one of the orthopedic doctors apologising for the delay in organising a biopsy on the new mass. Someone in the system had put it down way in the future without realising it was urgent. Anyway it was way past the time when it should have beem biopsied and he informed me he had organised the biopsy for the following day, Friday, and that he wanted me to come in to hospital immediately that night, so that I could be ready in the morning . He also informed me that he had arranged an ENT review for the lymph nodes in my neck.

I was making my evening meal at the time he called and finished doing so. So off I went to Brisbane. I chose to leave my car at home as I did not like leaving it out over night, especially as there had been much vandalism of cars last year (thankfully the police now have a station on the island and things are now a bit more peaceful). Ferries are only hourly at that time of night and the bus did a bit of a Cook's tour of the 'burbs on the way in. I arrived at the hospital a bit after 8:45PM and their admissions counter was closed so I went up to the ward. The doctor had a lengthy chat with me.

The biopsy required fasting from midnight. I always find sleeping in a new environment such as hospitals always takes a bit of getting used thus I was surprised that I fell asleep easily and enjoyed a good night's sleep, despite all the clatter and noise.

The ENT team saw me early in the morning and the ENT consultant was very happy with nose, throat and mouth. He asked me about TB (which I once tested positive to but was not followed up at the time). Anyway he gave me a clean bill of health as to ENT and dental problems and suggested the possibility of lymphoma as a possible cause of the lymph nodes.

However the Orthopedic doctor told he doesn't think the nodes are lymphoma as the nodes of the jugular chain are slightly enlarged. He told me that lymphoma does not usually involve an entire chain of lymph nodes and usually just one or two. He suggested they are probably just reactive. (They have been a feature in that region since 2002, slowly spreading and becoming very hard, even if not large. The nodes are also reactive to the consumption of alcohol, a symptom of Hodgkin's lymphoma. Hodgkin's nodes usually require removal to fully diagnose as there is a reactive component to Hodgkin's nodes and the cellular pattern required to diagnose Hodgkins is difficult to obtain by needle biopsy. - None of the doctors appear to realise that making mention of a possible needle biopsy - Hypochondriac Rob, Lol -Who am I to suggest illnesses to the medical profession? Perhaps more on thus subject in a future post).

After many hours of starvation, the biopsy on the mass finally happened about 5:00PM on Friday. The biopsy was carried out by fine needle aspiration in a CT scanner. (Hence the delay as CT were busy with IC and emergency cases on Friday, and I kept getting pushed back). The procedure was relatively painless and no more discomforting than the pain I am already in (which varies between level 0 to level 7). There was fair bit of fluid in the mass which the radiologist drained to make life a bit more comfortable.

The orthopedic doctor did not tell me the results of the PET scan, preferring to wait until all the results are together. He did tell me that the MRI scan does look like a sarcoma however until all the results are known he does not know for sure. He told me that I will receive the results in the ortho oncology outpatient's clinic this coming Friday. He didn't like to speculate on any possible treatments if it was sarcoma, until the 'big wigs' review the scans and results next week.

Blood pressure was a bit of a problem during the admission. The stress of the whole situation, rush and some of the frustrations would certainly add to it.

I spent Friday night in hospital due to the late completion of the biopsy.

All in all despite the frustration of the delays, hunger and long wait I was very pleased with the way things went. It was a pleasant change to encounter such a communicative and obliging doctor... he certainly works very long hours. The nurses were very good this time too.

Looking forward to Friday....

Rob

Mixed Weekend.

2008-06-16T18:17:00.002+10:00

On the positive side of things I upped my exercise quotient quite a lot, going for several long walks at a hard pace. There are certainly plenty of hill to walk up, thus giving my heart a good bit of exercise as well as my legs. The walks were invigorating though I possibly went a bit over the U-curve yesterday (Sunday) as my nose started to run due to the strain toward the end of the walk and I felt a little bit flat. The island is beautiful with an abundance of birds, the weather being very mild for winter.

On the downside the walk possibly aggravated the new growth causing it to become quite swollen. It was very painful and I had to turn in early last night.

The mass doesn't seem as large today. It is very inflamed and there is much much pain in the groin, crotch, upper thigh and genitals as well as the mass in my backside. As usual I still think there is some sort of infection involved.

I can recall one of my GP's back in 2000 during a period of illness, musing at an x-ray of my spine, pointing out areas of the x-ray of concern to him saying ".... a touch of spinal cancer perhaps?" While stroking his beard. I said "Just a touch eh?" (It wouldn't want to be much more than a touch.) I pointed out that antibiotics appeared to break up the pain and take the bite out of it. He said "Ah.... if only a little pill could cure all this...." (Diabetics can get an infected spine from ordinary every day bacteria.) Of course I'd love it if a little pill could indeed cure what currently afflicts me.

I didn't get a good night's sleep last night being in a fair bit of pain and discomfort which disturbed my sleep a fair bit. Today has been restful in comparison though I haven't been able to do all that I intended. I have had better days.

Still no appointment letters or news from the hospital :( I did send an email to their enquiry addy on Friday in addition to my calls. I'm starting to wonder if they exist. I'll call again tomorrow.

Rob

On a good news note.....

2008-06-12T17:52:00.002+10:00

Despite the possible spread of liposarcoma to my backside (still hoping it's infection), my leg still continues to slowly recover from surgery. It is now a lot less painful and I am reasonably mobile. I notice gradual improvement almost week by week. The only thing I can't do very well is bend over and pick an object off the ground or squat down. Tying my shoelaces when out and about is very difficult.

I went into to Brisbane today to lodge a claim for superannuation access and enjoyed quite a pleasant day. It's times like that when one notices these improvements. It was a beautiful day despite being winter.... about 26°C. The sea on the Bay was almost like glass. If only I had a camera.

Still no word from the hospital..... looks like I've been forgotten right enough. I'll make an appointment to see my GP next Monday/Tuesday and maybe he can move things along. I'm tempted to phone the hospital again tomorrow, as ortho-oncology outpatients are on Friday mornings.... we'll see.

Rob

Some future posts.

2008-06-12T07:36:00.007+10:00

I've decided to redo my earlier post on lymphadenopthay as it was a bit long and negative. Thus I will repost at a future date. I'll also blog on some of my prior history which may be pertinent. I do consider my cancer journey to have started in 2000/2001 as I had a number of quite nasty illnesses which both my GPs of the time suspected were caused by some form of cancer trying to happen. I'd generally recovered from these illnesses by 2nd quarter 2002, however some symptoms persisted even though I was otherwise well and enjoying life, things gradually and slowly went downhill from April 2003 onwards. There was also an interesting period back in 1995/96 with recurring infection which I might detail, as some types of infection can set one up for cancer. I have also been afflicted in the past by severe pseudomonas infection which was never treated with the appropriate antibiotics. The doctor, at that time, did want to hospitalize me and winged it with ordinary anti-biotics. Pseudomanas is a common bacteria, found in water and soil, enjoys warm humid conditions and causes problems for diabetic sufferers and people with illnesses such as cystic fibrosis. That bacteria may be responsible for some current symptoms.

All this and more. I may even write general interest articles written from the lay perspective and start to post links to articles on sarcoma, infection, cancer in general, and diabetic health issues. I'm trying to aim for articles about one screen size on a 1280x768 monitor. I'll probably write articles in parts. (Fodder for hypochondriacs.... 'grin'.)

My focus from now on is going to be on surviving.... a bit more exercise, perhaps more assertive with the medics (whether that will work lol ?.... they just do their own thing anyway) and more health blog articles. 3D graphics is great for providing a focus and perhaps some income on recovery but will take a back seat to survival. I'll drop some activities such as terrain creation for CFS3 for the time being.

Rob

Still Waiting.......

2008-06-12T06:19:00.003+10:00

I still have not received any communications from the Princess Alexandra Hospital. I did call again yesterday as there were no appointments in the mail. I was originally told by a resident doctor, during my last outpatient's visit, that I would most likely have an admission on 27 May for a needle biopsy of the new mass and that other tests/reviews would occur on the same admission. One of the reviews that was supposed to take place, on that occasion, was an ENT review (which is not a major concern for me at this time). However as mentioned previously, that's been shunted away to some yet to be determined time in the future. Also as mentioned previously, I also called the hospital last week and my enquiry was not responded to either.

I am starting to become concerned. The doctors did say that it appears to be a re-occurrence of Sarcoma going on their observations and examination of a MRI scan. Everything was supposed to be urgent given that liposarcoma is a life threatening illness. Whatever it is, is growing rapidly from the sensation perspective. Life is becoming quite painful and uncomfortable. Even if it is difficult to treat by surgery and radio therapy, there are other possible treatments too. I'll touch on sarcoma treatments in a future post. Likewise I'll post some observations on my history of infection which appears to be pertinent from the symptomatic perspective, as sarcoma has developed concurrently with acute and chronic epididymitis and recurring UTI's in parts of my body affected by these symptoms. (i.e. groin, buttock thigh)

Things are dragging out. It's now eight weeks since I drew attention to the new mass to my GP and six weeks since orthopedics began investigations, and other than an MRI and PET scans nothing else has happened.

I also haven't forgotten the possibility of Hodgkin's Lymphoma due to long term adenopathy. My GP had referred me to a private surgeon to carry out a biopsy for that one. However when I mentioned that to the PAH Orthopedic doctors, they said they would do the whole lot and thus I shelved that referral.

One wonders if I simply have been forgotten. This appeared to occur last year. Orthopedics referred me to oncology, for radiotherapy, when liposarcoma was first detected by biopsy last June. The oncology department re-assured me that orthopedics were monitoring my situation and would advise me of my surgery date accordingly. However when radiotherapy was completed and I had not heard from them they looked up the computer system and there were no appointments or orthopedic monitoring in place. I would have been waiting forever if I had not mentioned it, according to one of the nurses. It's a bit of a concern that there is apparently no monitoring and review system in place by the orthopedics department, other than the outpatients system. Of course they have yet to give me a follow up outpatients appointment either. :( Early next week is the earliest my GP will be available.

Rob

The Waiting Game.......

2008-06-08T12:19:00.003+10:00

I'm still waiting to find out what is happening for me medically. The admission for a needle biopsy and CT scan did not happen as originally advised by the Princess Alexandra Hospital doctors. I was told it would probably happen last Tuesday week. The doctors were planning to check out my neck at the same time..... a "one stop shop" as the specialist called it. I did receive a letter advising that I had been placed on an ENT waiting list at Logan Hospital of all places, miles outside of my locality, and will be advised in due course. I did attempt to contact my consultant/surgeon's registrar and left a message with his pager service, last week, but have yet to receive a reply.

If no further news by Tuesday I'll see my GP.

The only event of note to happen in the last 2 weeks has been a PET Scan which took place on Friday. Hopefully that will shed light on my situation.

I'm a bit sore at the moment as one can imagine. Having a large mass in one's backside is not good. I still think there is an element of infection involved, even if there is a sarcoma growing. Adjacent areas have been affected by disease for years as posted previously, and much of the pain and flare-ups sure feel like infection. It sometimes reaches level 7 pain, but then can just as easily disappear altogether leaving mild discomfort. The area of hard tissue continues to grow.... not good :(

I am otherwise ok and am in good spirits and moral. I am having however to rely on superannuation, financially, which is finite unfortunately.... a bit of a worry. I was hoping to return to work in April/May. However with pain, discomfort, possible future treatment and surgery, it's difficult to offer my services to any employer at present.

I'm still working away on my hobbies (though pain is hindering me) and hope to release my Sopwith Snipe aircraft for FSX before any treatment/surgery occurs. I'm not all that optimistic, that I'll make it though, as there is still much work to do.

Life is good and I'm glad to be here.

cheers

Rob.

Bad News: Cancer appears to have spread :(

2008-05-24T09:40:00.003+10:00

I've been meaning to update this blog for a while. It's taken me much longer to recover from the radio therapy than I thought. Anyway for the last six weeks a lump has been developing in my backside (i.e. arse, ass, bum, derrière or whatever one may wish to call it.)

I saw my general practitioner about it a month ago. He told me to contact the hospital via their outpatient system. I saw them two weeks ago. They immediately arranged an urgent MRI scan which fortunately took place on Monday of last week. I had my follow up outpatients review yesterday and I was told that it does look like a spread of the liposarcoma. I was going to say what a bummer!! However perhaps I'm being a bit too flippant. I've read of liposarcoma being referred to as a notorious killer. Of all the cancer's to have..... :(

Arrangements are being made to carry out a needle biopsy, ct scan, pet scan and an ENT review. I'll find out more on Tuesday. My poor old backside and groin are very painful :(

More posts to follow :(

Rob

Treatment for Sarcoma Now Finished

2008-02-14T11:45:00.003+10:00

This will just be a quick post. I had my final radio therapy treatment for liposarcoma yesterday (Wednesday). This time around the dosage was much less than the previous treatment and lasted only 8 days. It was described by the doctor as a booster dose, to ensure the success of the surgery.

I managed to commute successfully on a daily basis, though it was an ordeal at times. My leg is suffering from both surgical wounds & radio therapy. A new ferry timetable, bus strikes, a bus accident (no-one injured), and some drunken indigenous people abusing and threatening to assault a bus driver & passengers (on their big day) added drama to the period. (Local residents are not exactly happy about the new Ferry timetable though. Especially those who travel in peak times).

The leg did regress slightly due to the combined effects of traveling and therapy. Little things such as tying shoe laces, picking objects off the ground, and getting dressed after a shower, again became an ordeal after being quite easy to do for a few weeks.

Even the first round of radio therapy from August/September is still burning and flaring up with inflammation. Both that area and the flap area are very hard and become heated from time to time. The surgical pressure garment that I have to wear is an absolute life saver, greatly increasing mobility.

I've at least another two months rest and recovery at home now. I was told by one of the orthopedic doctors that the leg will take at least a year to heal, possibly longer. I hope I am not sidelined all that time.

Anyway I am sure I will benefit from my rest in the coming weeks. I hope to start walking again on a daily basis, provided the radiation treatment does not break my skin. I'll resume hobbies such as 3d modeling in a few days. Being considerably more skilled now I can achieve a fair bit in a short period of time. Thus I don't have to sit for long periods. I have music and the internet to interest me too.

I am very pleased to be temporarily free of the medical profession for a week or so at least.

cheers

Rob.

Not yet a cancer survivor

2008-01-25T17:06:00.000+10:00

Another month is almost over, the first month of 2008. I'd love to post that there has been remarkable improvement, but I cannot.

The only difference is that the back of my leg no longer feels like like a lump of cardboard with rocks embedded in it. The leg is a little bit softer now, but the fiery internal lumps are still there.

Thankfully the external wounds also have now healed and stopped oozing puss.

I thought I perceived an improvement in the condition of my leg on Monday of last week when I traveled to the PAH oncology clinic. However I returned home with a temperature of 38 ° C. The highest since leaving hospital. This week I have also been uncomfortable in bed at night, almost a throwback to where I was at in early December.

I've also been confronted with a plethora of other afflictions and symptoms :- massive itches in my legs; flare ups of inflammatory pain in various parts of my leg; stinging pain and the most ghastly purple-red colour at the top of my calf; flare ups of radiation burn pain; thrombosis type pain in the calf; severe fluid swelling sometimes partially affecting mobility. I am also experiencing loss of skin sensation in a 2 to 3 inch band along the length of the wound from the buttock to the back of the knee. There is also loss of sensation over large parts of the lower calf, though this is variable. The latter is sort of weird as the skin sensation is almost normal at times but the underlying tissue feels dead. At times the whole lower calf feels dead. I think sitting at this desk for more than a couple of hours has a bit to do with this. More restrictions.... :(

As to being a cancer survivor, the radio oncologist told me it looks like there might be a little bit they missed, hence further radiotherapy in February.

My visit to ortho-oconcology today, was next to useless and a general waste of time compared to other recent medical encounters...... I'm not happy :(

More later.... to be continued.

Rob

Still Alive........

2007-12-31T10:29:00.000+10:00

..... 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

2007-11-29T09:00:00.000+10:00

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....

2007-11-05T18:26:00.000+10:00

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

2007-11-01T08:17:00.001+10:00

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.

2007-10-26T09:29:00.000+10:00

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....

2007-10-26T08:03:00.000+10:00

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....

2007-10-19T19:55:00.000+10:00

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?

2007-10-04T20:24:00.000+10:00

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

2007-09-21T19:26:00.000+10:00

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!!

2007-09-05T06:46:00.000+10:00

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

2007-07-23T18:45:00.000+10:00

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

2007-07-23T08:37:00.000+10:00

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

2007-06-22T11:12:00.000+10:00

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