Sunday, December 26, 2010

In lesotho for festive season

Managed to get 3G for my phone here in lesotho. It is boiling hot here and at night there are mosquitoes and I put on sunblock every day and then Peaceful Sleep anti-mosquito cream every evening, It does make the manual lymph massage more difficult to do at night and I keep meaning to wash the cream off my arm first and then do the massage and then put the cream back on. My arm looks swollen today but I think I have lost the ability to tell. But it is Definately thicker than my right arm. My head - where it was sore from the tick bite fever - is still sore. If it worsens by tomorrow, will go get the pills again. Very hesitant to wear the compression sleeve. Will get hold of a tape measure tomorrow and get someone to measure the left arm vs the right, Then will know if its needed. Otherwise haven't chilled like this in years, Not much to do here,,,, so doing very little.

Wednesday, December 22, 2010

off to lesotho for about two weeks

Finished the Christmas edition at work - it hits the streets tomorrow - and off to Lesotho for about two weeks tomorrow.
Not gonna do much there apart from reading and making sure I don't get bitten on The Arm, the one that is high risk for lymphedema and which keeps giving me problems, luckily only temporarily. So am armed with Peaceful Sleep anti-mosquito cream and things which plug into plugs at night (not sure exactly what they are called). And going to take thin long-sleeved tops for being outside at night, as The Lymph Lady said: "Keep your arms covered".
My "new" GP - well, have not decided if going to keep going to him but he certainly is more accessible in terms of getting an appointment than my other one - prescribed an expensive multi-vitamin, Salgar V2000 (expensive here in SA) as well as a slow-acting magnesium tab. Took both today and then nearly platzed  when I went to the loo and my urine came out bright yellow. "Oh my god, I think I have hepatitus," I thought, as I made my way back to my desk to google "bright yellow urine causes".
It's the damn multivitamins working their way out my body. Truly is expensive piss, as it is called.
Well, I do look pale - convinced it's the medication I took for the tick-bite fever - and am a little tired (but then have had five hours sleep a night for the last few nights and being working very hard) - so agreed to take it, mainly cos I only need to take two of each per week, and if it doesn't help after a month.... well, will reconsider it in about a month.
So happy festive greetings to you all. Back in January, unless of course I make it to an internet cafe.

Tuesday, December 21, 2010

phew!! there is a god

So grateful. Arm is fine and don't need to wear compression sleeve anymore. Totally grateful. Totally relieved. Was so unhappy about wearing it.But The Lymph Lady says I look terrible and declined to do any massage today. So I am now off to the doctor again tomorrow re my tick bite fever. Must admit, I don't feel great. At the moment, however, it's past midnight and I am totally exhausted and have to get up at crack of dawn to take a friend to hospital to have her goitre removed.

Sunday, December 19, 2010

my bloody arm

Just took off my  compression sleeve and looked at my arm and it looks swollen. damn damn damn... don't know what to do as find the compression sleeve totally horrendous

seeing the lymph lady tomorrow

Seeing The Lymph Lady tomorrow and praying that I won't have to wear the sleeve anymore.
Might be wishful thinking but got The Yoga Man to measure my arm above the elbow today - both arms in the same place - and it seemed, although he is obviously not as accurate a measurer as The Lymph Lady, that my left arm was only 5mm, or just under 5mm, more than my right arm.
Oy, I hope so cos I am finding it pretty tough with a compression sleeve especially in this heat. Cooler now so ok but waiting patiently till 10pm to take it up. Well, not being patient at all. Waiting impatiently. The Lymph Lady said most people go to bed way before I do, so I can take it off at 10pm. And I do - wherever I am!!

Saturday, December 18, 2010

going crazy

Cos of the infection from the tick bite fever, have not been able to do the manual lymph drainage and was told to wear the compression sleeve instead. Well, it is driving me crazy.
I am so damn hot. Sitting at work now - almost 11pm on a Saturday night but doing the late shift, a six-weekly occurrence - and I am boiling. Plus it's itchy.
Am wearing a short-sleeved t-shirt with a cotton knit with loose sleeves over it but I cannot bear this heat. Didn't realise that the tamoxifen affects my temperature so much, cos always dress so coolly.
This is a bloody nightmare. Wearing this sleeve has put me in a foul mood and made me uncomfortable all day.
Think it's gonna change my life if I have to wear it fulltime. That is what I am terrified of. It's the middle of summer and what am I going to do, even if I have to wear it for a month or two while my arm settles down. Am frantic. Sleeve feels very tight, especially above the elbow (but maybe that is also cos am working on the computer and driving and ... so bending my elbow a lot, making it hurt), and when I take it off at night, it feels awfully thick.
Started doing lymph massage again this morning. Am so much better and pills end tomorrow anyway.

Thursday, December 16, 2010

more about people quitting tamoxifen......

I enjoy the newsletter I get from breast cancer . 

The one that arrived today has More about people quitting tamoxifen and the like....

Maybe I am just lucky and haven't had bad side effects, although I think I have had shitty side-effects, but I am so adamant that I do not want the cancer to return so will do what it takes.

The main focus of the article, but not the comments on it, is about co-payments being so expensive. I have to be honest that I am not aware of what I pay for it every month, if anything. Whatever it is, it does not have an impact, unlike my lymph treatment for borderline lymphedema, the cost of which I am super-aware of.

Anyway, these are the comments I posted below the article:

"I am on tamoxifen. Think it’s been nearly 18 months now and I wouldn’t dream of discontinuing it. The truth is that I have no idea if I have a co-payment on it (I live in South Africa and our medical aid, what you call health insurance, is clearly different) but no matter what it cost, would beg, borrow or steal to get it.
Yes I have had side-effects but am tolerating them. I am having 6 monthly checkups – which hurt like hell – to see if I have endometrial cancer (although the oncologist disagreed with the gynaecologist and said only yearly checks were sufficient); went to a dietician and have lost 4kg of the 6kg I gained despite not eating more; and tolerate the hot flushes – a residue of thyroid problems in the past is that my temperature is wonky and I am often freezing or boiling, but I tend to deal with it by wearing cooler clothes than the weather dictates and carrying a soft wrap in my handbag for when I am cold.
I am grateful that there is something that can help in preventing the cancer from returning. I just hope and pray that it works. (I also had radiotherapy as a preventative treatment plus 17 treatments of Herceptin.)"

Tuesday, December 14, 2010

survived day 1 of the compression sleeve

Well I wore the sleeve today and wasn't so bad. But now in a hassle about what to wear tomorrow. It's my sister's birthday and she's having a lunch and would like to look nice but on Thursday it's the work party (well, a braai in the office cos the other official party was apparently awful) and I don't have enough long sleeved cotton tops to wear...... have resisted buying more than the few that I do have because do not want to prepare for wearing a compression sleeve. It must always just be temporary.....but what am I going to wear tomorrow?
Meanwhile my head is super sore tonight. Burning.... and The Yoga Man was laughing about how I can barely walk to the kitchen - really??? - and I was talking about going back to gym on Friday.
Well, I am not going to gym on Friday anymore cos the biokineticist thought it was crazy considering all the pills I am on (despite the doctor saying I could gym from Thursday), and so instead of deciding on Thursday as planned, I have cancelled Friday's session too.
But it is kinda worrying that my tick bite fever is still so prevalent - is that correct English? - because the longer I have the infection, the longer I cannot do lymph massage and the longer I will have to wear the compression sleeve. Go away, infection, go away!!!  Well, the lymph nodes are a little down.... quite a little down, in fact. Now bugger off, you damn infection, away, damn spot, away... or whatever that quote from the Scottish play is....

back to the compression sleeve - just in time for summer festivities

Have not done manual lymph drainage massage since last Tuesday when realised that my lymph nodes in my neck were enlarged and had that emergency scan. Then on Thursday was diagnosed with tick bite fever and then today, on a repeat visit to the doctor, with infected tick bites, ie, a secondary infection.
But was nevertheless still horrified when saw The Lymph Lady today and she declined to do the massage but took one look at my arm, measured the affected arm above the elbow and then did the same on the other arm, and the bad arm was one and a half cm more. Bad arm, damn bad arm.
Anyway the shocking part was that I cannot do the lymph massage, but I can wear the compression sleeve. So I start tomorrow. I cannot believe this - just in time for the summer holidays. Don't think it has sunk in yet. So praying that my lymph nodes in my neck go down soon, and the infection clears up. On another antibiotic now, an additional one, that is.

Thursday, December 9, 2010

I've got tick bite fever!

I have found out why I feel so awful and why my lymph glands are so swollen and sore: I have tickbite fever. To be honest, I am relieved although reading up about it now, I realise how dangerous it can be. I have been told I don't have to go to bed so guess I have it mildly but am surprised that the doctor I just saw now didn't tell me not to exercise - asked my biokineticist and she said I cannot - and what it certainly proves is that oncologists, or at least the oncology centre I go to, are brilliant at treating cancer but certainly don't adopt an holistic approach.
They were very quick to tell me they were not one bit worried, great, and I am more than delighted that I don't have cancer but, as the multitude of swollen lymph nodes in my neck was evidence of an infection, I think they should have said that if I start feeling ill, I should see my GP.
Tick bite fever can be bloody serious, for example, and I was prancing around wondering for how long I had to walk around like this.
Anyway, it was The Yoga Man who insisted: don't take your car to the garage today (the front bumper was loose); go to a doctor; your health is more important than your car which did kind of piss me off as I always do prioritise my health more than anything else.
If you don't have cancer, the oncologists don't have time to deal with you. So you need to take action.
But I did listen. Cancelled the garage and then set my alarm for 2pm to see how I felt. I did feel better today than I felt last night. But when a friend at work told me I look terrible (I had also thought my eyes looked funny this morning and I was thinking I should maybe wear some eye-liner), I decided: that's it and phoned the oncology centre.
Joyce, I said to the nurse, I know I am annoying you but I need to ask you two quick things. The left side and the right side of my neck were scanned, but not the back 'cos it was not sore (and remember I had one swelling on one side when I went to the centre on Tuesday where the oncologist then found more lumps and the radiologist even more)....So, I said to Joyce, I now have a large bump on my head which is bloody sore and lots of bumps at the back of my neck. Now is this a problem? Should I be worried that they have not been scanned?
Also, I said, I don't feel good. At all. Should I go see my GP? Yes, she said, maybe you should and then if he is worried at all, he can phone The Tango Man and he will take the call.
So I phoned the doctor who was able to see me straight away. Brilliant. So off I raced and within one minute of being in his rooms, he looked behind my ears and told me I had tick bite fever. Now, I have no idea how I got it. But I am totally relieved that I now know why I have so many swollen lymph glands in my neck area. And I feel good to think that my body is healthy and fighting this infection and that I am not collapsing but am bearing up pretty well.
Of course, now I am worried that a bite on the left side of my body is threatening to my borderline lymphedema, and just to top it all: the bumper of my car came loose, became tangled below my car, I paid a  carguard at the centre where I went to the pharmacy to get the medication R10 to take it off (it took one second) and now it's a crumpled heap on the back seat of my car, which means I not only have to have it attached properly to my car, I have to get a new bumper!
But it sure beats having cancer!!
Oh, read more about tick bite fever in south africa

Wednesday, December 8, 2010

"he is not one bit worried"

Got a call from the oncology centre today. Not unexpected, considering I had a scan yesterday.
"He (The Tango Man) is not one bit worried," the main nurse Joyce said. "Yes, but the lumps (in my neck) are getting bigger, you can now see one or two just by looking and....." I responded.
"You could just see them yesterday too," she said.
"Anyway, he said I must tell you that he is not one bit worried."
And by implication, she was saying: don't worry either.
He said he knew you would be ok, she said. And then I realised he would not have left the centre before getting the report if he was concerned about my scan.
But I only found out this morning from my biokineticist that the big lump at the back of my head is probably also a swollen lymph gland, and that wasn't examined or scanned.
And my lumps are getting bigger all the time. Could feel them when I put cream on my neck this morning. And the ones on my head and the back of my neck make me feel slightly nauseous at times, at other times they burn. I wonder where the infection is that they are reacting to. I wonder if my haircut/highlights caused it. The Tango Man did say that anything can set this off - and mentioned a haircut. (He could see my hair was different.)
But again today Joyce said he thinks it was caused from The Lymph Lady's lymph drainage massages. I wonder if he knows that I also do it for about an hour a day. Every day, except for Fridays when I only do it for about 30 minutes. Mmm.... gonna phone the centre tomorrow to find out what I can do re this discomfort and burning.Wouldn't want it to last for weeks.

Tuesday, December 7, 2010

another emergency scan

My beck has been sore since about Sunday. Cannot remember when it started but by Monday night the muscles were so raised that I phoned the physio to make an appointment. Today my neck was fine and I cancelled tomorrow's appointment.
Not sure if that is related to this but anyway, neck was in spasm on Monday so asked The Yoga Man to massage it. "What's this?" he said, as he rubbed the left side of my neck. "What do you mean 'what's this'?" I responded. What is that? Is it a lump?
It was decided that I would ask The Lymph Lady when I saw her later that day. She said it was either a lymph node or vascular, nothing to worry about and we'd keep a check on it.
But it got worse, more pronounced, as the day went on.
So today, after a meeting at work, I got into my car and drove to the oncology centre. I have given up on phoning them. Not that they don't answer the phone, they do, but they tend to dismiss things. If I am there in person, they are forced to confront me.
I am here for three things, I said to Joyce: to get the blood tests I must have before my next appointment, for you to make a muga scan appointment for, and cos I got a lump on my neck.
She examined my neck, then went to call the doctor. He said there were lots of lymph nodes in my neck. We need to keep a check on this, he said, or something to that effect. I want you to go for a scan, he said.
Oh my God, I said, or something to that effect. Really? Well, you came here cos you felt something was wrong.... anyway, they phoned for an appointment and off I left.
Sitting there for the scan was the one of the few times since I was diagnosed that I felt total despair. I felt that if the cancer has come back, only months after finishing herceptin, it is too soon, too soon, and I would be doomed.
Anyway, the radiographer and radiologist did the scan (first one, then the other). Fine, fine, fine, said the radiographer but "it's so unusual to have all these enlarged lymph nodes" she kept saying, as she found one after the other and on both sides of my neck.
Anyway, happy to report that there is no malignancy. Everything fine according to the report, which I read a few times, although one node is 7.5mm and another on the right 12mm which seems pretty pronounced.
The doctor was not there when I went to take the results so not sure what happens next. The one person who did the scan, cannot remember which one now, said that my doctor, The Tango Man, might want a rescan at some point.
I felt pretty anxious. Almost burst into tears afterwards but ok now. Although it's a stress I find hard to handle.
But why all these enlarged lymph nodes? They're reactive, not malignant, said the radiologist. But why?
The Lymph Lady has now advised no further manual lymph drainage massage for now. "If there is an infection we need to wait," she said in her sms. 
The Tango Man had said earlier that her treatment with me might have moved the lymph to my neck but dunno if that's possible.
For now, am totally relieved that there is no malignancy.