h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

>>Your Dr Onco sounds like a good ally. Tell him there's 20,000 Hootooers standing beside him ...<<

I think this is just a fantastic idea, and says a lot about this community of ours...
I agree with Fathom, tell Dr Onco that we're standing by you both

cheers ismarah

hi Bels

Read the update. So well written, honey. Almost hate to say that given the subject matter. But you do very well with it.

As for chemo vs radiation therapy. I dunno. My mother (75) had her breast removed earlier this year and she totally refused chemo - said she didn't want to feel sick and have her hair fall out. Whatever. So she underwent a month of radiation therapy. *Her* worst symptoms were having dry skin and itching and that some of her hair did end up getting dried out and falling out as well. But six months later she has been pronounced as being cancer free! Except NOW they have told her she has diabetes! Poor thing.

I asked my nuclear medicine doctors about you and they said the PET scan would be done only if you were needing some other sort of treatment or if surgery was a possibility. Apparently the PET scan is much more efficient at picking up on secondary tumours - like you said, you also had some in your liver? Anyhow. If the chemo is working for you then I wish you all the best and continue to send you lots of hugs.

Hey yes! Good to hear you can still enjoy a glass of wine or two. Fine wine and ice cream! And you can save single malt moments for special occasions like birthdays, or Christmas, or . . . Thurdays?

kisses,
az

Yes, well. It's all very complicated. The chemo drug that I am on is Capecitabine (aka Xeloda) which turns into another well known chemo drug called 5-Fluoroacil (aka 5FU). Mine is given orally, as I have said, but it can also be given by injection or by IV drip.

Both capecitabine and 5FU are given for breast cancer as well as colorectal, and they do not cause hair loss. Perhaps your mother was not offered this treatment, perhaps it wasn't explained to her properly, perhaps this, perhaps that. I wouldn't know. I assume that the radiotherapy was not to her pelvic region, as mine is.

Believe me, I also have several family members and friends whose cancer tales I could relate. I could tell you about breast cancer experiences, oesophageal cancer, someone else's bowel cancer, someone who has just died from lymphoma, a friend who had a brain tumour, and so on. I purposely haven't done so, because none of these people is me, so their stories, while possibly interesting, are probably quite irrelevant. More importantly, trying to make comparisons and draw parallels is, well, I have to say that it is at best pointless, and could even be seriously misleading and lead to all sorts of misunderstandings. So I just don't do it.

Bels

sorry,

I can imagine that by now you have heard possibly every 'cancer story' imaginable. I didn't mean to add to that. Won't do it again.

Just will send hugs from now on.

az

I'm sorry if that came across as a bit abrupt. I didn't mean to snap at you. I do tend to feel rather frayed as the day wears on and I know I can get grumpy. Fortunately I have a very loving circle who tell me immediately that starts to happen! I absolutely insist that they do that.

I know it's also very natural when you hear about someone's difficult situation to try and relate it to your own experience. It's a way we have of dealing with these things, but it does have its pitfalls...

So please, don't be upset, and know that I really value your companionship here, also your emails. And of course I have no idea what you may be going through yourself.



Bels

Fathom -
>>So the bad news is the radiotherapy is horrible ... and the good news is they can give it to you?



Welcome to the weird topsy-turvy world of cancer. Here in the Magic Kingdom of Tumourland nothing is as it seems. It's just like being in a Hall of Mirrors.

hi again,

I wasn't upset at all and I didn't think you were 'snapping'.

kissitos,
az

Went to a toilet on the M42 yesterday - loads of posters - 2 scared to talk about it ? 2 embarassed to talk about number 2 ?

Apparently there's a big campaign going to get people to notice things earlier because people leave it too late before going to the doctor.

Timing ?

Stay strong. (And I never thought you were female.)

Bels, I've waited far too long to post here, I've been subscribed for a few weeks now but am just catching up with my backlog.

I deeply admire your courage... even if you don't feel that you have as much as we give you credit for, your display of courage gives you away. I'm glad to hear there's been progress, that's very encouraging. You are in my thoughts and I wish you the best.

A couple of pages ago you mentioned bubble gum flavored ice cream I think, it reminded me of when I was younger we would go to a local ice cream parlor that had bubble gum ice cream. I don't know if it's the same as what your children tried, but ours was pink with multi-colored gumballs in so when you were done with your ice cream cone you could chew on the gum for awhile. I didn't particularly care for it, but it was my sister's favorite

Thanks, Miloso. No, it wasn't like pink bubble gum at all. It was chewing gum, like Wrigley's Spearmint. It tasted pretty much like toothpaste, and in an ice cream that is revolting. It was in Frejus, which is on the French Riviera but slightly, er, downmarket.

Hi Bels,

Toothpaste flavoured ice-cream? Some flavours just weren't meant to be really, were they?

I notice they are planning to introduce screening for bowel cancer. Slim consolation for you of course but I'm sure you wouldn't want anyone else to go through what you are experiencing. To that end; I'm sure your account of your own experiences will have prompted others to examine their own bowel habits a little more closely. It certainly has me. If that leads someone to get an early diagnosis and early treatment your brave and candid writing may have saved a life, or lives.

Take care Bels, be strong.

F

My sympathy, and best wishes for your future...No smileys, though I'd do a hug one for you, if you hadn't said you'd rather not..TTFN!

Hi folks

I've posted another update on A1050986 - just search for or scroll down to:

June/July 2003

Once again superbly written Bels...thanks for that. The odds are a bit pants...but someone has to be in the ten per cent hey!
take care and thinking of you lots.
boots

What boots said.

B

I have read your journal entries with growing admiration for your courage.

One small thing I could help you with, try seimensmedical.com under oncolgy for pictures of linear accelerators.

In the meantime my thoughts and best wishes go to you and your family.

Ditto.

Thanks everyone. I've tried Siemens, Varian, Elekta and Linacsystems web sites, plus a few others, and it's the same story. They all have small thumbnail photos of these machines which IMO don't give a very good idea at all. I'm not too bothered about finding a decent picture, though. If my verbal description isn't very good you can always ask me questions, which you usually can't on a manufacturer's web site.

As it happens, my radiographer has promised to email me some links and possibly photos, so we'll see what she comes up with, but I'm not holding my breath (it only increases your blood CO2 level and eventually makes you gasp).

Hey Bels.
Just dropped by to see how you are doing today.
Take it easy mate.

Bob.

I too have been reading this since you started and am filled with the usual admiration of your above friends and colleagues. A scientist friend in a similar situation five years ago (he's still hanging in) said the essay by Stephen Jay Gould at http://www.cancerguide.org/median_not_msg.html was the most useful gift I have given him. Hope it might be of interest to you too if you haven't already read it.