Wednesday, August 25, 2010

I have to admit this

Realised something while driving home from the symphony concert tonight, I have been so busy that have hardly thought about the compression sleeve, Over the weekend, well, for weeks now, have been traumatised about wearing the sleeve, Now have done so much while wearing it - work all day, go to functions, art exhibitions, symphony concerts, parties.... And it hasn't mattered a damn. Admittedly now so convinced my arm is fine, that am completely nonchalant about it all. And not unrelated that feel so much better - nose not so blocked, am less congested, Love feeling better. Guess everyone does,

Tuesday, August 24, 2010

Cannot believe I am saying this but.....

From the beginning, that is, when I got diagnosed with cancer, I always thought it was bullshit when people said they learnt something from having cancer. I resented the fact that one could gain something from such an ordeal. Now although I would much rather never have had this dreadful disease which in many ways has fakked up ny life, can honestly say I have learnt something from it, Well, gained something from it, I have gained personal insight: always thought I was a misery; now I know I am not. And, on a lighter note, I have learnt I am a brat. Breezed into the orthopaedics place today to buy a glove to assist with putting on the compression sleeve, but made damn sure that I announced I didn't have lymphedema and this was just temporary.... Who the hell do I think I am? I am wearing a sleeve, right, so clearly there is a problem, right? Bloody brat, I thought, as I drove back to the office. Must say am much much happier now though that it seems my arm might be settling down, Bizarre: the same set of circumstances ie wearing a compression sleeve but I am no longer unhappy although the itchiness has been driving me crazy. Now I just yank it off at 10pm. So now, at 10.50pm, it is easy to be nonchalant about the compression sleeve. Lol!!!

Monday, August 23, 2010

good news

Am so relieved. My arm is back to normal. That does not mean, however, that I no longer need to wear the compression sleeve. I do. But only until my arm stabilises.
So now I need to pray that it will stay down next week.
It's funny. Funny strange, not funny ha-ha. I had started to develop this habit of pulling down my t-shirt sleeve (long-sleeved t-shirt despite the increasingly hot weather as we approach summer here in South Africa) so that nobody could see the part of the compression sleeve which covers my hand.
Now, because I know there is now a good chance that my arm will stabilise and I won't have to wear this compression sleeve permanently, I no longer mind who sees it for after all, it is just a precautionary, temporary measure. Suddenly I feel lighter in step, things seem better all around... disgraceful that a few millimetres on my arm can do that. But the implications of having lymphedema are too ghastly to contemplate.
It is not just the swelling. It is the infections that can come with disfunctional lymph. Ok, I do have disfunctional lymph, following radiotherapy for breast cancer in the lymph, but if my arm is not swollen, if I don't have to wear a compression sleeve and can wear my normal clothes - that is, short sleeves and sleeveless tops and dresses - and just have to do manual lymph drainage massage twice a day, it's ok. And yes, I do find the massage pretty time-consuming, but it is a billion times better than wearing the sleeve which is not only unsightly, but affects what I can wear and is damn itchy.
The Lymph Lady said she thinks the compression garments absorb moisture from the skin (clearly others find it itchy too). I said I thought it was cos I have dry skin from having thyroid problems. I am covered from head to toe in creams: a multitude on my face, special diabetic cream on my feet (don't have diabetes but it was recommended by a podiatrist cos my feet are so dry although don't have yucky heels cos have regular pedicures), and an endless array of creams on my body - E45 on my neck where it is still itchy sometimes from the radiation treatment, thicky Nivea almond cream where I had radiation cos it's close to normal pH value means bacteria cannot thrive so I cannot get an infection and so it helps prevents lymphedema (lympedema can both cause infection and by caused by it), as well as aqueous cream on the rest of my body and Clarins hand cream.
Oh, it is just too wonderful to think I might not need to wear a compression sleeve. And so, having to get up early to drive to Northcliff to get a special glove to assist with putting on the sleeve is nothing, a minor irritation. The sleeve was digging into my upper arm cos my arms are short and it was reaching to under my armpit, and so this glove helps move it down.

Sunday, August 22, 2010

can't bear this compression sleeve

Am really really not enjoying wearing this compression sleeve. Like now, it is damn itchy, probably cos I am hot. Dunno.
Feels like things are crawling over my skin.
At better moments, I think it's ok. That I am ok. Still have use of my arm and even if it swollen, it is very slight (last week was up 3mn in one spot).
Seeing The Lymph Lady tomorrow and will find out how it is now.
Praying that I don't have to wear this compression sleeve always. It's driving me crazy and that is excluding the unsightliness of it all. Went to buy long-sleeved loose cotton t-shirts for gym this morning - not easy to find, as all the shops have summer clothes in now.
And off to a barmitzvah party now and cannot wear what I had been planning to wear - a gorgeous, black lace beaded dress - as it has short cap sleeves and I am wearing a compression sleeve.
So, instead, will have to wear a long sleeved black t-shirt (ok, it's new, but still....) with a black skirt.
Anyway, am going to check if there is a lymphedema support group or something like that in South Africa. What a joke. Have not been to a single breast cancer support group meeting. Asked one group to keep me informed of meetings, and they haven't, and the oncology centre has details of meetings - but only just before they happen so if you not there regularly.... somehow have not been to one. But might help if I chatted to some other poor unfortunate soul who has to wear one of these things. I want to speak to someone who is young, so goes out and does things... not someone who stays home anyway and so it makes little difference.

Thursday, August 19, 2010

I am a coper

Despite what I blogged last night, I am a coper, Realise that today as not only do I feel better about things - got it out my system by writing about it - but as all around me people are falling apart, I am lucky.

3mm and I am depressed

My arm is up 3mm in the middle of the upper arm. So now have to wear a compression sleeved a few more weeks. Finding it hard to contemplate. Finding it hard to know what to wear cos need to wear longsleeves and have about 6 -10 long sleeved cotton tops. Finding it hard to consider throwing out my entire wardrobe - tops, dresses.. Everything. Only long sleeved to remain. Finding it hard to share other's excitement about the impending summer. 8ut I need to give it a month before I go crazy. For now its just 3mm in one spot. But if it keeps going up its lymphedema.

Monday, August 16, 2010

From highlights to The Sleeve

Feeling invigorated cos after months and months - well, to be exact, after losing my hair from chemo then it growing back and then having herceptin and being advised not to tint my hair - The Tango Man said I was free to tint my hair. This is despite the fact that Erica, the former head nurse who has since left the oncology centre, advised me to not to. But the doctor said I could, so I bunked a bit of work today and off I went.
Had highights - a mix of blonde, light brown and red - on my now multitude of curls (thanks to the chemo) and I decided I enjoy having different hair (so curly now) and am kinda enjoying growing it.
That's the good part.
The not-so-good part is that I have been wearing a compression sleeve for close to two weeks now. Praying that I won't have to post Wednesday when I see The Lymph Lady but today, for example, arm felt great all day till I got home and it felt like something was tightening around my upper arm. Bloody sore.
When I took it off just now to wash (almost 11pm), I noticed that for the first there are marks on my hand where it fits and also at the wrist - does this mean that my arm is now swollen there too?
Beginning to see how people with HIV/Aids must feel: disgusted with the horribleness in their body. That is how I feel about this lymph in my arm, the so-called borderline lymphedema.
And another dilemma I have is: what do you say to people, strangers like the trainee hairdresser washing your hair who says: "Oh, I just noticed now. Did not see the bandage before. What happened to your hand?" and you say: "It's a long story" which is a far from satisfactory answer. But why should I go into the whole spiel of "Oh, I had cancer and ...". I do not want sympathy.
One part of me now feels I must think of the sleeve as a bandage, that is what people see. The Yoga Man, however, feels I am now the advocate for a sleeve and should tell people what it is, that I am at risk of getting lymphedema but who, apart from those who have it/are at risk of it/know someone who has it, even knows what the hell that means? I need an easy answer for relative strangers eg work colleagues. Perhaps something like "have a problem with my arm/hand".

PS: My hair had a grey sheen to it when it first grew back. Now that is gone and it is very dark, with only a few, single, occasional grey hairs.

Saturday, August 14, 2010

still relieved

Am still relieved that I am ok after this week's tests, the post-herceptin tests. Had a chest x-ray, an abdominal and pelvic scan, a muga scan and a myriad of blood tests. My muga is down. To 60 when it was in the 70s pre-treatment so the treatment has affected my heart but as it is still within normal range, I am fine. Another example of why being healthy and relatively fit is important. As bizarre as it sounds, if you are healthy and get cancer (yes, it can happen, I am proof), then the treatment is easier.
The Yoga Man berated me for my facebook posting. I wrote that I had breezed through treatment and was now 100%. He said neither are true. But really, in retrospect it does feel like I breezed through treatment and only having four chemo sessions was nothing. Well, a little. And compared to having cancer, I am now 100%. Yes, it is a reprieve for three months when I see the oncologist again (and have to have blood tests but no more scans till January). But I feel so much more relaxed inside me.
And yes, have some side-effects from the tamoxifen I am on, and yes, it's all fine when I am not experiencing them (like at this second). but really, can cope.
Less sure about my arm. Yes, will admit that the thought of lymphedema throws me into despair. Will actually go so far as to say was depressed about it last week. And I am not a depressed person. Funny that. Always thought I was a misery till I got cancer. My mom used to say to me - smile, and see if your face cracks - but really, I might not smile a lot but even if I am miserable, and even when I wake up I sometimes feel like I don't want to get up, once I am up I am as bouncy and cheerful and energetic - to the point of driving people around me quite crazy.
Last week was an exception. Was depressed about my arm. couldn't sleep, had terrible thoughts and was pretty uptight right through my birthday weekend in Durban. I feel as if lymphedema is a disability and I don't want to wear a compression sleeve. Don't mind sometimes; but not permanently. Unfortunately, if I develop lymphedema - am borderline now - I won't have a choice.
The Yoga Man commented how it's bizarre that my looks and image are important to me, yet I keep getting illnesses that affect my looks. First got thyroid with thyroid eye disease and my eyes bulged and were puffy, so bad that I often wore dark glasses and once it settled down, had an op to have the excess skin removed. Eye still bulges now but no longer hassled about it. Yeah, I don't look the same but it's ok.(Oh, and hardly incidental, but both the thyroid and the cancer treatment have made me gain weight.)
Now I have an arm problem. The irony this week was that now my 'affected' arm is thinner than my other arm, but that was from wearing the sleeve and from having that special tape on.
Have not been able to do lymph massage all week, but have worn the sleeve for more than a week now and guess what? Have survived. But part of why it's ok is that I am pretty sure that when I see The Lymph Lady again on Wednesday, she will tell me I can take it off. Hope so. She spoke about wearing it one day on, then one day off until I determine how my arm is.
Let's see.
As my blocked nose does not appear to be getting better - not serious, only an issue cos of the lymph and my arm - she has now said (sms-ed her yesterday) that I must do two days of half-the-time lymph massage, then see how I am. Going to wear the sleeve till I see her this week. Luckily it is not too hot here in Joburg - actually surprisingly cold - so wearing long sleeves is not so bad for now. Took out all my longsleeved cotton t-shirts (I never wear tailored shirts although I do have one in my cupboard), and just wearing those. So far ok.
Sjoe - but that was a long stream of consciousness. Still want to write about what The Tango Man said about exercise, but will leave that for another day.

Wednesday, August 11, 2010

All fine!

I am very lucky. And I believe being so healthy to start helped, I sailed through my treatment and now I am fine, Only see him again on 3 months time..... Him being The Tango Man and I love him for making me better. I love everyone at this moment. Writing this from ny car via my phone, in the oncology centre carpark. Viva life! Vvva health! Viva me in fact!

Tuesday, August 10, 2010

a traumatic week

My arm has been giving me hassles. Well, when I saw The Lymph Lady two weeks ago, it was up. And I was shocked. But then it did not seem to go down. So I contacted her and got an extra appointment. And it was up again. And I was flying to Durban for the weekend. And although it's a one hour and 10 minutes flight, with my arm being up two weeks in a row (never happened before, she said I should wear a compression sleeve. I have been high risk for lymphedema since the week I finished radiation over a week ago but this was the worst it had been.
Well, I was devastated. Off to a hot place and I would have to wear long sleeves. Worst of all, it was my birthday over the weekend and I would spend it in a damn compression sleeve.
Well I have worn one now for five days. Plus she used kinesio tape on my arm and my upper back, a type of bandage which she said would act like a continual lymph massage drainage.
Well, my arm was damn sore this weekend. Each day started off fine but by about 9pm or later, I would be in agony, desperate to tear off the sleeve. I was in despair. Then by last night it felt better.
Today I saw The Lymph Lady. She measured both my arms and surprise surprise, my left arm, the one which she now calls "borderline lymphedema" (she used to call it "at high risk of lymphedema", was thinner than my right arm, except for the very top, which was the same measurement. Furthermore, my left arm was done everywhere except the very top.
It was also decided that I had some kind of infection (I told her I thought it was sinuses or something...Whatever it is, spent the weekend blowing my nose.)
Anyway, it has been decided that I will continue to wear the sleeve till I feel better, do no lymph drainage massage till I am better (she also declined to do it today), and do no gym till I feel better.
Yet now that it seems I won't need to wear this sleeve permanently, I feel jovial and in better spirits.
Also, had tests today.Chest x-ray - fine. Abdominal and pelvic scan - fine. muga - mmmmmm, down again.It was in the 70s pre-treatment, down to 65 six months ago, and 60 today. The Lymph Lady advised no exercise - no yoga tonight,no gym tomorrow - until I see The Tango Man tomorrow.
Only he can determine the seriousness of lack of it of the muga scan but it does show that the herceptin has affected my heart. A rate of 60 is still within normal rate but I am uncertain as to whether the decline is normal or not.
The severe strain I have been under is gone; but still have the problem of getting blood test results tomorrow - tumour marker, liver function etc.....
Oh, planning to go out straight from work tomorrow so not sure when will post results.
Funny, been delaying writing this post for a week cos felt seriously depressed about it. Much more cheerful today since it seems I might not need to wear the sleeve permanently. Well,I have to do one day on, one day off when I get better, but somehow I feel cheered. I do not want to a compression sleeve permanently. It is a big deal for me.

Monday, August 2, 2010

tomorrow a week....

Always hesitant to write anything either on facebook or twitter or this blog which might bring in a huge outpouring of emotion as a response. Am not looking for sympathy. But cannot deny that tomorrow a week is the day I go for all my tests to see if I am ok, to see if all the preventative stuff I have been taking is working. And I am feeling damn scared.
My preventative treatment has consisted of radiation - when I had it, my cancer had disappeared completely so it was purely preventative - then tamoxifen and herceptin.
Now my biggest side-effect - well the one that takes up the most time and energy is the swelling from the radiation, because it can block lymph glands and then you have a problem. Worst case scenario is full blown lymphedema and having to wear a compression sleeve.
At the moment my arm is up. Cannot tell if it's worse than last week or the same. Just hope it's just the same and that I don't have lymphedema which, after the thought of the cancer returning, is my worst health nightmare.
I have been doing manual lymph drainage massage twice a day (in the last month or so, some days only once) for more than a year... since the week I finished radiation.
Oh I do sound all woe is me...but feeling a bit apprehensive. Would be damn unlucky if all this hadn't worked.
Anyway, no more miserable feelings. Lots to do before then. Not least tonight's lymph massage....