Sunday, March 21, 2010

fitted for flying to france

I am sitting here with a compression sleeve on my left arm. Oh, nothing radical has happened although my arm did feel heavier as from yesterday, following herceptin on Friday, number 12 out of 17.
That is why I am wearing it now, reckoned it could only help, but the reason I even have a compression sleeve - number/size 2 - is that I am flying to Monaco and the French Riviera to write a travel piece for work. Leaving on Tuesday night. And the deal with The Lymph Lady is that if I went overseas - I live in South Africa - I have to wear a compression sleeve on the plane.
Was kinda horrified when I heard from The Sleeve Man (and was amazed to find out that his two-man practice is so busy, fitting sleeves, prosthesises (sp?) etc)that I have to wear it not only for the flight, but until I go to bed that night. So, in my case, arriving in France at 6am, catching a connecting flight to Nice I think it is, and so will be wearing the sleeve until I finish cavorting around Monaco, my first destination, late that night.
Must say though, that wearing it is not so bad. It has been hurting around the elbow but it is not such a fakking nightmare. And at least it will be wintry where I am going.
Also wasn't so charmed when The Sleeve Man measured my arms, both arms, and found my left arm was 1cm thicker along the middle upper arm and a whole 2.3cm thicker at the top. Damn.
More worrying, however, it that my arm felt thicker yesterday and today. When I put on a cardigan at work last night (was doing the midnight shift), it was tight around my left upper arm, a horrifying feeling. But seeing The Lymph Lady on Tuesday before I fly out - have not seen her for about a month (well it feels like that but is probably only about 3 weeks) as she was at a conference and then I had to cancel seeing her last week as the appointment clashed with the only time the entire week The Sleeve Man could see me.
Anyway, won't be updating blog while on my trip cos not taking my laptop and cannot update it from my phone as won't have internet access on it, as only doing SMS (text) roaming....
I guess I could take my laptop but really, it is not such a portable one, more designed for home use with a wide screen which is great for writing assignments, and anyway, with the hassle of being unable to carry anything heavy with my left arm or over my left shoulder cos of the lymphedema risk, don't need anything else to carry - already have my fab new purple luggage which consists of a large 50cm bag and a matching smaller one, all on wheels of course, for the cabin.
So wish me bon voyage!
Oh, and nearly forgot. They told me at the oncology centre that cos I am on tamoxifen, I am also at risk of developing a clot so am on ecotrin, which is essentially a coated aspirin, for a few days before, then during, plus a few days after my trip - plus have to wear flight socks during the trip...
But what the hell. Will all be fine. More concerned about acclimatising myself for the colder climate and leaving in warm weather and arriving in cold and so how to juggle clothes on the plane, than anything else......

Saturday, March 13, 2010

to go to chat rooms or not

One book I read said that cancer chatrooms were a bad idea. I am divided. A discussion like this one, herceptin side-effects forum, on which is reputable site, as well as others on the definative site the american cancer society site are helpful but to use a Yiddish expression, they can "drei your kop" which means something along the lines of 'drive you demented'.
That said, the one above on herceptin side effects is very helpful. About two people also report bad taste in the mouth as a side-effect - although I had it only once, one and off for about two weeks though - and many sore muscles in their legs and muscle spasms - I have had three but one was soooooo bad, my calf muscle was still sore for about two days afterwards.

Sunday, March 7, 2010

cancer awareness day

Saw a guy with bright blue hair yesterday and someone said it was the equivalent of shaving your hair off for the shavathon, the cancer awareness thing which I have been criticised - just by a friend - for not supporting. Know very little about how it works but cannot see the point.
Now someone just told me it was cancer awareness day yesterday, arranged by the SA Cancer Association, and they had a shavathon and this spray-your-hair-any-colour thing in Rosebank. Mmm.. I didn't even know. Wasn't in Rosebank yesterday so didn't just come across it. Was at oncology centre on Monday and there was nothing there but guess it's aimed at the general public. Hmmm...don't think they are doing a good job of raising awareness then.

Monday, March 1, 2010

no full body massage if you've had a tumour?

THE SICK PATIENT: It's been a bit of an information overload day. Most distressing of all was when I asked about the girl who had been so sweet to me, chatting the oncology centre, wanting to know what cancer I had and talking about how her treatment for melanoma wasn't working too well. She was really attractive and young but did not realise until today that she is 24. She is dying. Last time I was there I asked about her and was told she had pneumonia from the compromised immune system and was in hospital. Oh, she has recovered from that but ... they phoned her husband while I was there and he apparently said she is alive but very bad. Cannot walk. Her mother had come out from the UK and he thinks it's time she went to hospice. The nurse told me that it had spread to her brain and lungs and she had had to stop the radiation when it didn't work, and then had to stop the IV chemo when that didn't work either. I am very upset. A very pretty, very sweet, very friendly girl - "one of the nicest ones said the receptionist" - and now she is dying.
On my way into the centre today bumped into a friend of a friend. Had heard last night she had had a lumpectomy and was starting chemo today. Well she does not need to have chemo, just radiation, she said, but when I said she was lucky, she didn't seem to hear me. She is so angry. Angry she has cancer and angry cos the radiation oncologist she is seeing told her: You could have a heart attack - all the treatment is on the left and it's going to affect your lungs.... (doctor sounds like a rude nightmare).I was told that these days they do everything to avoid such damage but then again, have been banned from cardio. Was astounded at how angry this woman is about everything and could not remember if I had ever been like that. Asked The Yoga Man who said yes, I was still angry especially about things one should eat/not eat cos I feel I was eating healthily already and that I am also angry cos I won't support things like Shave-athons where people shave their hair off in support of those who have cancer... He said, and this I understand, if you have an accident and are hit by a car, does that mean you're going to stop looking left and right when you cross a road? Good point that, I think.
TUMOURS AND MASSAGE: I was the only one at the oncology centre this afternoon. Don't know why. But anyway, it gave me lots of time to chat to the nurses. And was amazed at what Erica, the head nurse told me. If you have had cancer which involves tumours, as opposed to a blood cancer, then you should not have a full body massage - can have neck or neck massages - and should not use weights, the ones attached to machines, at the gym. Apparently this can cause the tumours to spread.... she said I should ask the oncologist more when I see him again. Luckily I don't like massages but I wonder why I was not told this before. They also told me people come from overseas to see The Tango Man for a second opinion. I do respect him but find this strange...
LYMPHEDEMA AND THE AFFECTED LIMB FEELING FULL: Saw The Lymph Lady today just before I went for the Herceptin treatment. As I saw her at a different venue, she did not have my file with her and so did not measure me. She just did the lymphatic drainage massage and also corrected the massage I do. Anyway, she then said my arm felt fine. How do you know, I asked. Oh, she said, it often/sometimes feels full.... that horrified me.
HERCEPTIN AND EYESIGHT Asked about my eyesight. Is it just cos I am getting older and need glasses or is this treatment affecting my eyesight, I asked. Don't go for an eyetest, yet, said head nurse Erica. Wait a few weeks after you have finished herceptin, and then have your eyes tested. Mmmmm....
Had Herceptin today and so far, hold thumbs, feeling fine.........praying for no bad taste this time but far more importantly, praying that the herceptin works and keeps the cancer away.
WHEN I FINISH HERCEPTIN: All going well, I am scheduled to finish Herceptin at the end of July. That seemed like perfect timing, as my birthday is at the beginning of August and I thought if I have money, I could take leave and go away somewhere nice. Today they explained to me that I have to go for a scan (s) after I finish treatment, and then three weeks to a month later, arrive with my scan(s) and then get the all-clear, please God.
Then I can go around the world, they said. "Haven't you heard of fly now, pay later?" said nurse Emily. Ja, that reminds me of the girl with melanoma. She called everyone "Nurse Erica", "Nurse Emily" and so on. I feel very sad about her.