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
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