Today marks 9 months since I had surgery for an abscess in my back, and I’m still recovering from it, with a hole in my side that tracks 11cm deep. I still have regular dressing changes, and my back is a hodge podge of scars and odd swellings. I can’t believe it’s been this long and although the opening where packing is inserted and measurements are taken is smaller, it’s still there, and not showing much sign of going away anytime soon. The depth of the track is actually DEEPER now than it was after the original surgery, but the last time I saw the ‘specialist’ they weren’t too particularly concerned about it. My GP on the other hand, has been quite concerned and has contacted the clinic at the hospital that I have to deal with, but didn’t really get too far either.
Here’s the situation…
I had breast cancer in 2001 and had a mastectomy on the right side. In August 2005, I had reconstructive surgery, moving muscle and other tissue from my back to my right side to re-create my right breast. It’s not the best reconstructed breast I’ve seen, but I’m happy to no longer have to wear a bra and prosthesis. The end of February this year, my BGLs got really strange and I felt very ill for a couple of weeks. I’d seen the doctor, was on antibiotics, but just couldn’t shake whatever it was. And then I developed cellulitis (a skin tissue infection) that tracked in the area of one of the major scars on my back. The entire right side of my middle back was swollen, very red, and very hot. Blood tests were ordered that confirmed that I was ‘septic’ (the infection had reached my blood stream and was systemic). I was sent to the ER and consequently seen by the department that did the reconstruction - the plastics team. They determined I had an abscess and immediately scheduled me for emergency surgery. The goal was to allow it to heal from the inside out, and that is still the goal, but now a large section of it is a cavity on its own and separated from the area the top portion that is the deep 11cm track that is dressed on a regular basis. This area swells and becomes quite ‘full’ and painful feeling. We think part of the swelling, fullness and pain is due to lymphedema – my lymph nodes were removed from under my arm when I had the mastectomy so this system that removes lymph fluid from my right side doesn’t work as well as a normal persons. As a visual description, imagine a regular ruler sitting above a dinner plate. The ruler is the ‘hole’ or track that goes from my side to my spine and is 11cm deep. The dinner plate is the area underneath that is a hole inside - a cavity that is just there, going nowhere, and certainly not going away.
Due to the swelling and the fact the other track actually became deeper than it had originally, my GP ordered an ultrasound, which showed that this cavity was ‘detached’ from the other track and inflammed. So my GP sent a fax off to the plastics treatment team at the hospital requesting that I be seen sooner than my scheduled appointment, which at that time was about 4 weeks away. In the interim, I had my regular yearly mammogram and appointment with the breast cancer center. I showed my breast surgeon my back and his first reaction was ‘what the heck is THAT?’ (it’s not pretty). When I explained what it was from, he suggested I get in to see the plastics treatment team earlier than my scheduled appointment (now about 3 weeks away). So this was three professionals - my GP, my breast surgeon, and my visiting nurse - who all felt that I needed this area checked out. When I finally heard from the plastics treatment people, my new appointment was a whole week earlier than my scheduled one. The appointment turned out to be rather surreal. The doctor more or less sentenced me to life with this cavity with shrug of her shoulders. As to expectations, she said they have none as they already gave up all their guesses on how long this would take to heal. She thinks the main track will probably eventually heal and I’ll just have the cavity left permanently and it will be susceptible to infection. And then she shrugged. She didn’t even seem too concerned that the depth of the track is now deeper than it was start with. One of her comments was that that they couldn’t do any further surgery on it because obviously I don’t heal so further surgery isn’t an option - basically there’s nothing more that they can do for me.
That was in October. Here we are in December and I’m not even sure when my next appointment will be (it was to be 4 months and they will send me a card. In the mean time, my GP is trying to find out who can see me for another opinion. As I’m a ‘public’ patient in Australia, this gets a bit tricky. If I were a ‘private’ patient and had my own insurance, I would have lots of choices. As a public patient, I don’t seem to have any choices really. My GP can’t refer me to another hospital treatment centre as he would get in trouble for not following protocol. He has spoken to the head nurse of the plastics department and they didn’t have any alternative suggestions and were less than helpful. His next step is to talk to my breast surgeon, and I haven’t heard the results of that conversation, but based on his observations and suggestions in late September, I think he has the same problem as he would have to deal with the consequences of the politics of seeing me for this problem rather than letting the plastics department handle it. Personally, I’ve come to think that we need for me NOT to be seeing surgeons for advice if surgery isn’t going to be an option.
For the last couple of weeks, I’ve been having some really good and really bad days. The good days I’m able to nearly have a normal life, do extra walking, take care of my house, keep up with stuff on the computer. On the bad days, it starts with a fever in the morning and high BGLs both of which are intermittent for the rest of the day, despite following the same routines and meals as I usually have for breakfast and lunch… so I know it’s not what I’m eating that’s causing the higher BGLs. I also feel tired and can’t keep up with stuff, needing to nap in the afternoon and sometimes falling asleep watching TV or at the computer in the evening. As I’m already on antibiotics, I talked to my GP about the fever when it first started and he felt it might be a virus, and I should wait a few days and watch for any new symptoms, but if I start getting worse to come in and see him. Well I haven’t really gotten better or worse. At any rate, I probably do need to get back and see him – and find out if anything is to become of his talk with the breast surgeon.
So this blog entry marks approximately 270 days of this. Most of the time I cope quite well and have a good sense of humour, but there are times when I wonder what next? Especially on the days I’m running a fever and my BGLs are higher than normal… it just seems like there’s something else waiting around the corner to ambush me, and it worries me. Yet I don’t want to be the type who’s continually looking behind me in fear either. ((sigh))
Thanks for listening.