It's a big cavity

The ultrasound was interesting. The doctor who would be writing the final report was brought in so he could see the areas being scanned and to ask me a zillion questions. He determined that the area in question is a cavity. Here's the report:

"The patient's palpable lump extends posteriorly from the sinus which is currently covered by gauze swab. There is a hypoechoic layer within the posterior lumbar region which is not present on the opposite side. This appears to be a contiguous layer which is most likely the current healing abscess cavity. There is no fluid collection within this cavity but there is a small amount of air and the palpable thickening is most likely due to granulation tissue within the wall of the cavity. Its overall dimensions were approximately 7x8cm with a depth of 0.7cm. There is no other mass lesion identified within the soft tissues of the back and in particular there was no evidence of a lipoma."

I was OK with that as a result (I read it before seeing the doctor), but he was most unhappy about it. He was hoping it was a lipoma as that would mean it wasn't anything to worry about. He was really impressed with the RDNS report and mentioned that it was excellent to have such great communication amongst medical teams. He made copies of both reports and gave me them in an envelope to give to the doctor I see at Flinders. He then sent a 'semi-urgent' referral fax to the Plastics team at Flinders outlining the problem as asking them to please see me before my regular scheduled appt (22 October) and giving them the details of the current situation. With added little stars and underlines. He told me that basically I was going to need to be in the care of surgeons as this was way beyond his capabilities. And that they may decide to do further surgery on the area. {{Great. Deep sigh}}.

Monday is a public holiday so the soonest I'd hear back from Flinders is Tuesday. Meanwhile, he prescribed another round of antibiotics and got approval for a months supply (again).

Well I'm off to find something else to do and think about. No point in dwelling on it.

Well this can't be good....

As I'll be having an ultrasound on my back today because of a rather large area of unusual swelling, my RDNS nurse took measurements of my wound cavity. Would you believe, the cavity is actually increased in depth in 23 days? It's now 11cm deep. Where the swelling is just touches the end of the cavity, so she wrote up a report for me to take with me for the ultrasound and for my GP.

Feelings: Frustration, anger, bewilderment, gobsmacked, confused, a little scared, questioning.

This just really sucks.

Will post results of ultrasound and GP visit later today. Must also remember to get a prescription for antibiotics again too.

What is the deal, why is this happening? Damn!

Mammo Went Well, So What is it? Glasses, Just Peachy

It's been a busy couple of days. On Monday I had the mammogram and annual check up with the breast cancer clinic. All went well, no surprises, all OK. The registrar that saw me didn't know anything about lymphoedema, but was amazed at the swelling in my back, as was the breast surgeon. He asked who was treating me for it (the plastics department) and said I should get them to look at it ASAP. Tuesday I saw my GP and he ordered an ultra sound of the area which is scheduled for Friday. I will take the results back to him afterwards. He agreed with my theory about the other swelling in the back side, underarm, neck shoulder and chest as being lymphoedema. When I go back on Friday for results, I'll ask for a referral to the Lymphoedema clinic. I'll also get the antibiotics restarted as I forgot to ask about that yesterday and the usual complaints are creeping back again. Frustrating, that. Today the RDNS nurse was pleased to know I'd be having an ultrasound done and will do a measurement on my wound and write a bit of a cover letter to go to the ultrasound people. The swelled area is mainly against my spine and right at the end of where the wound ends, so its a bit of a concern all around. But, it's not hot, it's not red, so it's not likely to be an infection. What the heck it is though is any ones guess.

My glucose levels are still weird - high in the mornings and better in the day. It just seems to be one of those things as nothing I do as far as diet seems to make a difference. Not even lots of green tea. Of course, no telling how much higher it might be without the tea and with it being wonky, I'm still not about to rock the boat and go without the green tea to see what happens. I'll just stay the current course that's worked for me the last several months and put the morning readings up to something happening with my body (and obviously somethings going on - that swelling on my back is a bit hard to ignore).


In other news, my new glasses arrived last week. I ended up not buying them on-line as I wanted them to be progressive (also known as multi-focal), and these are not really the kind of thing you can buy on-line as there are measurements that need to be taken so they're set properly. I ended up with two pair, one being for reading only, and other pair are the all in one multi-focal, anti-reflective transitional lenses. The frames are VERY similar to my old pair, but the sides are pink/purple. Here's a couple links to what they look like: Elle EL 18524 #1, and Elle EL 18524 #2. They're very comfortable, and I've had very few problems getting used to them. I got dizzy one day reading a newsletter, but after Rod reminded me I needed to move either the page or my head to keep the print in focus, I've been fine since. Last year, they only gave me half a prescription as otherwise I'd be too disorientated. So this year I have the full prescription that I need. And wow, I thought I could see before, but these are amazing. And I love not having to lift my glasses up just to read text on labels any more. I asked to have them be anti-reflective so the webcam will show my eyes rather than a reflection of the monitor. Is that being vain? (Shrug) I just figure if the webcam is there, it may as well give the best view possible.


Just Peachy. 'Just peachy' was one of my Mom's phrases when things weren't going that great, which is funny now I think about it because that's being sarcastic and I never actually thought of my mother as having a sarcastic bone in her body. Huh. Anyway, the kitty you see to the right is my friend Peach. Good lord, I didn't name him. He'd have a much better name if I did, that's for sure. Peach belongs to one of my neighbours in back, and comes over to play in my back garden and now also visits me and we have a mutual little love fest routine. He's not allowed in the house, but he does occasionally hang out waiting for us at the patio door. He's a black and peach Ragdoll kitty, and even though he's a boy, he's gorgeous. He's not quite adult, and loves to chase bugs in the yard. His owners have given him two collars - one with a bell and one that's a beautiful series of beads that clink together. This is good, as it gives all the birds fair warning. He's also been registered and tagged. One of his tags is a cute pink heart that has his name on one side and the other has the phrase "It's all about ME" in lovely script. I laughed when I first read it.

We started our 'relationship' by ignoring each other, sort of. I just knew if I called to him or walked up to him, he'd run away and probably never come back. So I went about my business and tried not to scare him away. He'd take note of me and pretend to clean himself. We'd both steal glances at each other though. I noticed that he'd take to sleeping a little bit closer to the patio on every visit. Then one Friday night, he walked up to ROD and they made friends! I was a bit shocked! But happy that they seemed to like each other. The same night, he came up to me for the first time, and then decided to sleep on the mat in front of the sliding door. When I went outside late that night, he'd curled up in an empty planter and just looked at me as if he belonged, and who was I to argue as long as he didn't want in the house. So now when Peach visits (which isn't every day - I think he makes the rounds of the neighbourhood) - if he's in the middle of the yard, he comes running up to me and we have a little pet and cuddle then off he goes. He's exactly what I've wanted -- someone else's nice kitty to visit me and let me love and watch, if only for a few minutes every day or so.


I ordered a pair of noise cancelling headphones last week, and wow, are they ever nice. I use them when I need to 'chain' myself to the computer to either work on websites or to write. They really help with avoiding distractions and letting me think easier. Beautiful sound, and quite comfortable. This was one of the recent 'Catch of the Day''s and only $24 which is a great price.


I think that's about me for catching up at the moment. I'll write more once I've had the ultrasound if we're any more the wiser.

Fear and Answers ... and a wedding too

It's that time of year again. Every year since I had breast cancer, like millions of other women, it's time for my annual mammogram and check up. It's a hard time. Often we're reminded of the anniversary of when our lives were turned upside down, and there's always worry, fear, holding our breath, hoping the other shoe isn't going to drop. Some women really have a struggle as the time to the next annual check up looms near. All kinds of things play on our minds.

It isn't something we look forward to much, but I've found in the last few days that I do look forward to getting it over and done with for another year. And I'm hoping for answers. Or validation of my recent hunches.

I have a new theory about how I managed to get this hole in my side with it's deep 9cm cavity. The more I look at and consider this theory from various different angles, the more sound and rational it seems. And while most normal doctors wouldn't know or understand it, the breast clinic, especially since the Lymphoedema clinic is attached to it, should recognise.

In the last couple of weeks, my RDNS nurse and I have been noticing that my back has these areas with pockets of fluid that are firm and only on the the side where I've had the reconstruction surgery and the hole is. The thing is, I haven't been too worried about this, as I've been experiencing this since the reconstruction surgery. The odd swellings stop at my spine, like there's a dividing line, but it sometimes extends around my right side to the front to my chest. I've already been diagnosed with lymphoedema in my right arm, and my hunch is that I have it in my trunk too, which is what the odd pockets of fluid in my back are all about.

Lymphoedema is one of the not so well known consequences of having had life saving surgery for cancer, when lymph nodes are removed in order to help stop the spread of cancer, and to access if it's already spread into the lymph nodes. This affects breast cancer patients as the nodes are removed from under the arm. It also affects men who've had prostate cancer surgery as the lymph nodes are removed from where the leg meets the groin area. These nodes are used to help circulate lymph fluid which is something that's just under the skin and helps us fight infections. When the nodes aren't there, the lymph fluid has a harder time getting channeled out and accumulates. It can stagnate and fluid simply continues to build up, causing painful swelling and this can become permanent. Along with the swelling, it can also cause serious infections as it's a breeding ground for bacteria. And of course an infection or in my case, an abscess can cause additional fluid to build up, causing chain reactions like I've experienced with the abscess and now the very slow healing.

I didn't piece all this together though until yesterday. I got to thinking about the random swellings that I've had and how they come and go (and tend to last awhile when they're here). I suppose the fact that it's very uncomfortable and makes it hard to move when half your back is tight and swollen can lead you to think about why it's that way. So I went in search of information and found a web site that is extremely well informed and things like the abscess and recurring infections all fell into place for me. I do have an advantage of sorts if this is the original cause of the abscess and will be an ongoing thing for me to deal with. The Lymphoedema clinic here has Professor Neil Piller, who is a world expert on the subject. I've taken part in a clinical study the clinic did studying the effect of Tai Chi exercise and arm lymphoedema, so it's not like I'm a new patient either.

Anyway, the web site where I found the most interesting information was: http://www.lymphedemapeople.com

This particular page, in fact a lot of web sites, don't discuss truncal lymphoedema much (it's not as common as the type that affects limbs), but it does talk about some of the side effects that I've definitely had too much experience with.

It's not that I want to have this problem... but it would explain and answer so much. I'd much rather be able to put a name to the events I've had to deal with over the last 6 months than to think it was just some weird mysterious random event. I want an answer.

-------------------

Well. Gosh. My son got married in the USA today. I'm so sad I wasn't there, but so happy for him and my dear DIL. They are a wonderful couple and I'm just so proud of both of them.

Finally! I'm reachable again!

Last time I wrote about the problems I had with switching to Dodo post paid for my mobile and finally gave up with them and went to a new company named Savvytel (savvytel.com.au).

I made the switch last Thursday night, but getting my old number ported to the new one proved problematic even for the nice people at Savvytel.

It all boiled down to more poor customer service from Dodo. When I had switched to Dodo (pre-paid) sometime last year, everything had to be done through Rod because he had a driver's license and I didn't have any photo ID at all. A few months later when I got my passport, I went through the procedure to have the phone account transferred to my name. Apparently when Dodo made this change, all they did was change the NAME, not the date of birth. It's the date of birth that's used for comparison purposes when a phone number is ported from one mobile company to another. On a hunch, after thinking about the ownership issues, I gave Savvytel Rod's birth date to try and ... tonight, after nearly a week of not being able to be reached via my personal phone number, I *finally* have it back.

Kudos to Savvytel too - I've talked to them on the phone twice and both times the person I spoke with had also read my Emails -- one of which had my hunch about the birth date and gave them Rod's to try. They had already put that in motion before I rang them today.

In other news, the parcel my sister sent me last week arrived today too. I found a few extra goodies that I wasn't expecting - some butterfly notelets and a bag of OMG, SUGAR FREE Mini Reece's Peanut Butter Cups!! Yum! Other goodies included Celestial Seasonings tea for myself and my friend Vicki, my mothers watch, which I wore my entire trip to the states... until one of Diane's kitties used it as a play toy and managed to lose it under an end table. It wasn't found until after I returned to Australia. And something I'd really been wanting - two sticks of Benydryl anti-itch stuff. There's nothing here in Australia like it and it really works quite well. I came back with a stick last year, but sadly it didn't last long as it's a liquid and anything liquid tends to evaporate here. Not this time. I'm keeping these in the fridge!

There's tons of other things I'd like to write about, but for now I better get going on some items I'd like to tick off my to-do list.

Procrastination, Blogging software, Dodo idiots, Savvytel

Procrastination is a funny thing. Last night, once I finally got caught up with all the things I was behind on from being out with a cold last week, I decided I'd do a blog update. I was looking forward to it. I put a couple of albums into my music player and had just the right mood going... and then decided to find a 'blog utility' for my computer so I wouldn't have to use the web browser just to add a blog entry. This led to a long series of installing 'dev' packages so I could install the latest version of 'kicker-kblogger' - a KDE based blog utility for the panel. In the end it took all evening and I still wasn't finished so it had to wait until today. Once it was all installed, it didn't work. Oh, it'd run, but the 'update' button to send any text I'd written was greyed out. I looked on the web, made sure it had all the right info, and still no go. So I ditched that and tried a couple of other applications. I've finally settled on one named 'Drivel'. Great name! It's not to fancy but does the job and I can even edit previous posts.

What annoys me though is that Blogger.com / Blogspot.com made a switch about the time I started the Random Experiments blog to a new 'Api' (way of working) and that was AGES ago, and yet there doesn't seem to be any Linux/Ubuntu blogging applications that use the new api. For me, this means that if I use Drivel to upload a blog entry, I still have to go edit the entry with my web browser if I want it to have a title. It's just a little thing, really, but that's the annoyance. It IS a little thing. It shouldn't need me to go and fix it. Ah well.

I last wrote on Tuesday, and I complained about the cold that I had. It got much worse on Wednesday, and I spent most of the day in bed. Well, not really in bed, but certainly not doing much. My whole day pretty much centred around finding interesting games to add to my mobile phone and then installing them. The plan being that I'd top up my phone with fun things to play with, then go lie down and play games. Aside from the fact it took me all afternoon to find, download to my computer and then install the games, my plan worked. I didn't get to the 'playing' stage until around 6pm or so.

Wednesday's are Rod's long day at school so he didn't get home with until around 8pm. By that time I was feeling especially crook. All day I'd been quite dizzy whenever I got up, but by this stage, my head was spinning even though I was lying down in bed. We normally get KFC's hot wings for tea on Wednesdays, and I only managed to eat two of them and a handful of chips. Eventually the head spins got so bad, I lost my cookies... quite a rare thing for me. However from that point on I felt a bit better.

Both the RDNS nurse who'd been in early in the morning and Rod urged me to make a doctor appointment, so first thing Thursday morning I rang and got an appt for 5:40pm the same day. I definitely felt better, but I really felt that my ears should be checked considering how dizzy I'd been feeling.

One of my little 'projects' for Thursday was dealing with Dodo. Dodo was my mobile phone company, and are actually rated the worst when it comes to customer service and satisfaction. I had a pre-paid phone account, and the only problem I've had with them until recently was when I wanted International Roaming put on my phone for when I went to the USA last year. I got to the states and didn't have roaming turned on as I'd requested so I had to buy a different sim card to use over there for my phone. I've stayed with them because they had the cheapest call rates. This changed recently to a stupid plan where the rates went up to about the same as what most other places charge and the 'special' they offered was free hours when you talked to other Dodo users. I ended up with 11 free hours I'd never use, and certainly wasn't getting value for money with the newer rates. I'd shopped around and decided to go with their post-paid, $9.90 a month cap plan where I'd have $50 in credit to use each month.

One of the most annoying things about Dodo is that they outsource their customer support to people in India. There's something just so off-putting when your call (finally) gets answered and the person on the other end says in a really thick Indian accent 'Hello, my name is Glen. How can I help you today'. Nothing wrong with that, aside from the accent being so thick you have to think hard to understand what was said, and 'my name is Glen' is obviously a moniker. It's more likely to be something 20 syllables long that'd be unpronounceable. This of course after being on hold for several minutes while a recording interrupts painful sounding 'music' to remind you that your call is important to them. Which is after having had the call drop out about 4 times before finally getting far enough to be on hold.

On the 24th of August, I rang Dodo to get a post-paid account. I was told that there was about a 15 minute wait to speak with a sales person, but that I could leave my name and number and someone would ring me back. Nope, they never rang me back. So I called again the next day and ordered the post-paid account. Because this is a completely different plan, I'd need a new SIM card for my phone, and was told it should arrive in 5-7 days. Time passed, and when I had only received a 'terms of service' letter from them instead of the new SIM, I rang them again on the 5th of September. I was told that the reason I hadn't received the SIM yet was because there was some confusion about my date of birth, in particular the year. For some reason they had '51' instead of '61'. Now they had the correct info from me, I should have the SIM within 5-7 days. More time passed, and Thursday I decided I'd had enough. Dodo had charged our credit card for the first month's use, but I still didn't have the new SIM. Meanwhile, I only had about $4 left in my pre-paid account so from the end of August I'd had to be especially careful not to use up my phone credits. I'd found a company that offered the same rates I had been paying in the past, and decided I'd go with them. But first I had to get the idiots at Dodo to cancel the post-paid account order and refund our card. So Thursday, still not feeling that great, I rang them to cancel the account and was told the reason I hadn't received the SIM this time was because they had a problem porting my phone number to it. Right. In every previous conversation with them, I'd told them I was already a pre-paid customer. So they needed to port it from Dodo Pre-Paid to Dodo Post-Paid. I reckon this was a load of bunk anyway as you don't port a phone number before sending out the SIM. This is always done after the new account is set up and working... ie with the new SIM in the phone. I told 'Glen' this was rather irrelevant as I wanted to cancel the processing of the post-paid account and have my card refunded. It took several tries before he understood this (or so I thought) and he passed me off to someone else who was supposed to do the cancellation. This guy had an even thicker accent and was very hard for me to understand. I had to have him repeat a sentence about 3 times before I finally understood that he wasn't talking about the cancellation of my account, but instead was trying to tell me that he'd make it so I'd receive the SIM card 'quicker'. I blew my top. I had to use poor English, short syllables and repeat myself several times, loudly: "Cancel Account! Bad Service!". Hey, he finally got the point. I was then left on hold for several more minutes and when he came back he told me my credit card had been reversed and that the post-paid account process was can canceled. Phew!

So my next call was to the new company I'd found, named Savvytel. I wasn't planning to order a new SIM to be mailed to me, I just wanted to know if they had outlets where I could buy a starter pack which would include SIM card and a bit of credit. My first impression was one of glee - the person on the other end was Australian, and she spoke english. Amen! She was able to direct me to a local shop that had the starter kits without any problems. What a breath of fresh air.

As I'm telling Rod about the whole saga, my phone beeped a reminder that my Dodo pre-paid account was going to need a recharge by Friday if I didn't want to loose the credits I had in there. Well the plan was to use up my $4 in credit and then switch over to the new Savvytel account. So that meant we had to get the starter pack as soon as possible. We did that, and the man at the counter gave me good solid advice - he told me once I had the SIM and working to delete a couple of the 'support' phone numbers as those are where the 'catch' is with this company. It's better to call them on a landline for support. That's OK, because that's what I normally do anyway. I was impressed with him for offering the information though.

Later in the evening, it was time for me to use up my $4 in credits with Dodo pre-paid so I could make the switch to Savvytel. The reason for the wait was so my sister Diane was awake in Atlanta so I could talk with her. It took 15 minutes to use up the $4, though, which I was pretty impressed with. It should be even cheaper to ring the USA with my new account. This is good, because I'll be a granny soon and will need to be able to ring the USA without going broke.

The Savvytel website said it would take 24-48 hours for my old phone number to be ported to the new account, and it hadn't happened by the end of Friday so I sent Email on Saturday to ask if this would take place on the weekend or if it'd be Monday. Having never had a reply back from a telecoms company Email query to date, I didn't really expect an answer, but a couple hours later I had a reply from 'David' letting me know they'd received the port request and that it would take place on Monday. Really. A reply to my query... on the SAME DAY! I'm amazed!

Well I have a lot more to write about but I really feel like this is probably enough for now as it's getting near bedtime. Tomorrow I'll write about my doctor appointment and a few other things I have jotted down.

Check in

I have a cold. Worse, I've had a bad sinus and chest infection for a few months now and now I have this cold on top of it. I have taken it easy since last Friday when I started coming down with it, but while my nose seems to have less to complain about, the cold has moved into my chest.

I had my eye exam today and have a prescription for bifocals.

Then I came straight home and lounged in bed watching TV.

You know it's bad when you feel almost OK sitting down at the computer or watching TV but when you get up and move about you realise you're really not well. I'm off balance due to my ears and the sinus thing plus the cold, and the bursitis in my hip has returned so my leg wants to give out, or disappear on me again -- really not a good combination.

Anyway, just thought I'd check in and moan a bit. Going to bed now. Nurse comes tomorrow. And if I'm well enough I'll go see about getting frames for my glasses. The on-line option turned out not to be a good choice for bifocals and also I couldn't find frames that matched the size of my current frames. Ah well, at least I tried.

Very Little Change

Today (6 September) marks 6 months since I've had this hole in my side... the links below give a bit of a history about how this started:

1 - 2 - 3 - 4 - 5 - 6 - 7 - 8 - 9

I think I've pretty much mentioned this in the journals after these days, but the above links have it from the very beginning.

I am still having RDNS nurses come in to change the dressing on my side, and today the wound was measured. It started out as being 10cm from my side to my spine. It's a very very deep wound. In the past, the RDNS nurses have measured while I've been sitting, whereas the clinic always does this while I'm on my side, which has always been a larger number than what the nurses get. So this time the nurse did the measurement while I was on my side. And the results? It's 9cm. Wow, that's a whole centimetre difference in SIX MONTHS. At this rate, I think I can call it a 'piercing' and expect to have nursing visits for the next five years. Sigh.

I didn't mope about it, but got on with my day. I was a bit more productive today as I worked rather hard at keeping myself busy... I really didn't want to dwell on the lack of healing progress. It is SO disheartening!

I did take time out in the afternoon and watched an episode of Neighbours. I have been trying to either have a half hour break watching TV or taking a nap in the afternoons lately just to give my body a chance to regroup and repair.

Speaking of regrouping and having some down time for repairs, it's time for bed.