Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

minou123
I ,too, went alone and was glad I did . But we are all different . DH came to follow up appointments and has seen me to the ward each time although hasn’t been allowed to wait with me . But that suits me. I am better alone.
When I am not sure my mantra is “ It’s all about meee !”
Support goes into the circle of ripples not out if that makes sense .
It’s called The Ring of Support.

I love that diagram, Trumpton, it's so very useful.

@Bloodybridget, my ace Advanced Search skills tell me it came from a typo and sort of stuck!

I’ve just fallen a little bit in love with Bill Turnbull. He’s just been on breakfast telly talking about his cancer and he said how very unhelpful is the ‘battle’ vocabulary.

(A TQ DD bumped a thread about this not so long ago)

I’m sorry I missed both of those iVampire. Those phrases drive me mad.

@BitOfFun top search skills, you deserve a medal for that!

Thank you everyone. I have a condition called tuberous sclerosis which is rare, so even finding support for that is proving hard. It's unusual to get diagnosed as an adult, the majority of people with It are usually children or severely disabled from it.

@Skap I'Ve looked on McMillans website, the info is very brief, as is most of what google brings up.

BitOfFun Bloodybridget Trumpton
Thank you do much for your advice.
The ring if support does make sense.
And thank you all for being so welcoming.

Lots of updates to catch up on, hello to old timers and newbies from me. I’m away for a few days with the family. Nowhere exotic of course [fucking cancer].

I’ve just come in to the bar to get a large glass of wine for my bad mood and to show you all my bald eyebrows. I’m STILL losing hair even 3 weeks after chemo ended, and now am pretty much guessing where eyebrows should be. No sign of eyelashes making any kind of return either.

FUCKING CANCER.

As you were.

Hi Brassica. Enjoy your break.

I found that my eyebrows and lashes came back quite quickly once they started. I gave up trying to draw them in while I waited though. I just made myself look odder with drawn eyebrows than with none!

So fare the only hair that doesn't seem to be growing back is my nose hair. All the bits that need regular removal came back first! Thanks for that. While I am not anxious for a forest growing out of my nose, having a cold without nasal hair is a messy and unpleasant business.

I read somewhere about someone having been dignified during their cancer. Hard to be dignified with a constantly dripping nose

I too have a hairless and drippy nose. Brassica, hope your mood improves with the wine!

My dripping nose has been ongoing with Herceptin and I can’t go anywhere without a handkerchief. I had my last Herceptin jab 2 weeks ago so will be interesting to see if the nasal drip finally stops.

Oh God, I am stupid, just started looking at info about ovarian carcinosarcoma which is what I have . . got onto scientific papers re studies, talking about survival rates. Now sitting in a cafe trying not to cry. The only thing in my favour, and it is a big thing, is that mine was diagnosed early so it's only stage 2, most aren't detected till stage 3 or later.
Wonder if DP has found the stats, she hasn't said.

I don't usually do panics. Or drama.

Bridget the fact that yours was found early is a massive thing. Stats just give the overall picture not the reality for individual cases. I know you know that.

The reason why ovarian cancer is so deadly is because it is so hard to find it early. You did find yours early.

Having said all of that, with this foul disease there are always going to be days when some fact or symptom or bit of treatment hits you hard and knocks you for six. Sending you a hand hold.

Bridget we are all allowed panics and drama now and then.

Thank you meercat, I really appreciate your response.

Eyes and nose running freely here too. I'm awaiting the delivery of nioxin shampoo and conditioner. Reviews are mixed but my rl chemo buddy says it definitely made a difference to her hair so thought it worth a try. Won't be sticking it up my nose though

bridget sorry to hear you're wobbling but, as meercat says, there's a whole heap of difference between early detection and later detection.

Well I've spent a happy half an hour looking at the detrimental effects of herceptin on the heart, which can affect some users, after the person doing my repeat ECG this morning seemed than 100% enthusiastic about it looking ok. 'No major cause for concern' was what he said.....but my heart has never given me any cause for concern whatsoever...so wtf? Always something to fret about...

Well at least we can be sure that Kleenex are not going to go out of business any time soon!

WTF I am thinking that the person doing your ECG is just a glass half empty kind of person. For what it is worth my ECG's have always been abnormal as I have a heat murmur but all of my scans so far have come back as perfectly OK for Herceptin. I am hoping that yours will too.

They put us through so many checks and scans. It is a wonder that we are not in a permanent state of anxiety.

That should have been a heart murmur but with the hot flushes from the hormone therapy heat is also an issue

Just lost a bloody long post. Sigh.
@Bloodybridget I bet your own advice would be not to Google. But we all do. When I got my copy of the oncologists's letter to the gp it had a lot of detail he had "glossed over ". Such as the stage (I had previously just been given a grade), also the Nottingham Prognosis index which of course I googled and regretted. You are right though, I don't know much about ovarian cancer other than it's symptoms are vague in the early stages and is seldom found early. Yours was found early. Can you hang onto that and put the stuff you read in a box and close the lid?

@WTF99 Currently sitting in hospital having had my first herceptin. I have a heart rhythm disorder and it my understanding that its vascular efficiency that can be reduced by herceptin. The oncologist told me that I would have regular muga scans and even if they found there was a problem they wouldn't give up on herceptin just pause it for a while as the heart recovers. My feeling is that without herceptin I am much more likely to die of cancer and I want it if at all possible. HER2 positive BC used to have much poorer survival rates than HER2 neg before Herceptin.

Skap you're so right, putting it in a box and shutting the lid is exactly what I need to do, and I will.

skap I want the full whack of herceptin if i can get it for all the reasons you outline....ive had 4 of 18 so far....so hopefully my previously healthy heart will continue to perform well.....I guess it was just the dreaded scanxiety this morning. Such a lot hangs on all the various tests we have and I was looking at some of the less favourable heart outcomes this morning. I obviously need to take my own advice on googling and wait until I have information that is specific to me!

Sounds like some of you have had truly crap days today

bridget all cancers are selfish shits and some cancers and their variants are bastarding selfish shits.
You are perfectly entitled to wobbles and worries.
With stats remember they are out of date quickly and info online is often dated and remains online for all eternity.

Brassica hope you've had that glass of red wine at The Patience, there is plenty more of that and kleenex a plenty for those in need.

lemony I have heard of tuberous sclerosis in children but never in an adult. The diagnosis alone must have been a shock.

Have a good evening all.

catnidge you're right about studies being out of date, I think the paper I was reading was from 2013. I have an appointment with the oncologist tomorrow but I won't ask her!