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

Snows I meant to say at your tangle. I can imagine your psychologist might have been a bit lost for words!

I had a rather mixed outpatients yesterday (and don’t have anyone to talk to about it in RL)

The good news is that they’re fine with me doing the Marathon

But less good is that the suppression levels in my body aren’t quite low enough, bumping along at the threshold for the last 3 tests (3-monthly) and slight rise this time.

So they took bloods there and then, next results in 4 weeks

They’re not worried - I had a bit of a bumpy profile with results over the last 2 years, so perhaps all will be fine.

If not, then they’ll need to discuss what happens next - quite possibly moving to second line drug (I was in this situation a year ago)

So my scanxiety will be high!

I don’t want to tell the DC until I know what’s what. I said they needed to repeat one blood test, but others all fine (true)

Perhaps I’d better go for a long run to clear my head a bit!

Oh, and it’d

Hey iVampire, I am sorry about that, just what you don't need. 4 weeks seems a long time to wait for bloods results.
meercat hope the dishwasher is back in service by tonight!
Catnidge how lovely, a knitted tumour ! Do you ever watch Bake Off - an extra slice where Jo Brand shows pictures of cakes people have made at home which are complete disasters? (although I'm sure they do it deliberately to get on the telly as they are improbably awful)
WTF hope the rads planning meeting goes OK today. How's eating/taste going for you now? Could you enjoy cake afterwards or not?
Skap hope you are not still feeling sick this morning - are you still dizzy? Do you think you'll get a wig?

Just doing a callout to people who haven't posted for a while, would be great to know how you're doing (but of course no need to respond if you don't want to):
@BitOfFun
@fedupntired
@Doublethecuddles
@YoureAQuizardHarry
@Toofaroutallmylife
@whythoughh
@DCICarolJordan
@Diaryofalways87
@Dulcedelecherocks
@porolli
@redspook
@Minxmumma
@likeazebra
@LondonHuffyPuffy
@Gib1973

Sun is out here but more showers forecast.

Hello and thanks for the warm welcome!

Bridget- the cancer was picked up by an abnormal result from cervical screening; it was a follow up after a previous LLetz so am hopeful it’s early. It’s very strange having been told “you’ve got cancer” and being bombarded with tests to go to weeks of waiting to find out what will happen next! I had a very nice message from the specialist nurse who explained that I’m not alone as the histology lab has a backlog.

Catnidge- thanks for the offer of advice re the Hysterectomy. My mum had ovarian cancer (5 years cancer free now!) and carries BrCa2 so in a way I’ll be glad to have everything out.

It’s very grey and chilly here but I’ve cheered myself up by buying a dressing gown as I didn’t own one!

Hiya!
Rads planning went fine. The unit is very new and swish and the staff seem lovely. I'm feeling very reassured. Start 4th Nov and finish on 22nd.
After going to bed feeling ghastly last night, I'm quite a lot better today....all my sore bits have improved. Taste buds still absent.
Off to meet a friend for coffee now though actually j could do with a nap! Later...
Hope all appointments are going ok

Had my MRI this morning - was quite amused when I saw how you're positioned for the scan. You lie on your stomach and dangle your boobs into "cups" - brought a smile to my face! Wasn't expecting to have a cannula - I've got a bit of a fear of them, so was a bit upset. I'm guessing I'm going to have to try to get over it, given that chemo will start soon. It's weird - I have no problem with needles, but cannulas and blood tests usually make me faint - don't know why, but I don't seem to be able to control it.

Seeing the oncologist on Monday, so going to try to enjoy the weekend. Hope everyone is feeling ok and that you all have a good weekend. May join you in The Patience for a drink on Saturday night!

zorg In my post to you last night I contemplated telling you more about the MRI but decided it would likely just worry you. I found it ghastly having to lie face down for 40 minutes. I also had a chest infection and had to not cough. Those breast holes were amusing though. I am very, very flat chested and they were enormous. You can avoid cannulas with chemo, some people have a semi permanent port fitted into their arm or chest through which chemo can be given and bloods taken.

Skap the dressings drove me mad to be honest, honestly it's like a saga now with my armpit, the upshot after todays rads was that I may be allergic to the dressings so that made it worse also the radiologist thinks I'm reacting to the lotion I've been using, wish I'd thought of that earlier!

Have had 15 rads so five to go, was told today that next week it will be concentrated on where the tumor was so will give my armpit a chance to recover at least.

Jesus I feel as if I do nothing but moan about it, still can't get a clear answer on colonoscopy, someone is ringing me back all week again.

I'll have a good catch up on the thread later, I'm going for a rest now.

to all, sorry I can't catch up now, as always you are all in my thoughts.

My armpit was the worst part ( so far ) . Nobody told me how sore it would be but I think I was unlucky as 8 days after the operation it burst and then I just couldn’t keep it dry as it trickled all the time . I too had a burnt reaction to the dressings . Throughly miserable time .
5 weeks on it’s ok until I get tired or hot !
Have you come across Jen’s Friends ? They make heart shaped cushions for post surgery and just ask for a donation towards postage .
My armpit was much more comfortable when propped away from my body . I keep one in the car and one on my bed.
I hope everyone is having as good a day as possible .

Thanks Bloody Bridget
Sorry for not posting, one pathetic reason is I don’t know how to get bold text for names!
I am doing fine and feeling a bit of a fraud, as my treatment has been much easier than everybody else’s. Reading the posts has made me realise how lucky I am. I have had my appointment with nuclear medicine and my blood results are good with no signs of the cancer having spread. My next appointment is with my surgeon in November. At this appointment I want to find out exactly what my operation involved. I know I had my thyroid and 31 lymph nodes removed, 21 which were cancerous. I want to know exactly where the cancerous nodes were.
If it comes back it will to be lymph nodes which apparently if raised feel like sweetcorn.
Emotionally I think I am doing well, I haven’t cried once, which I find slightly worrying as I cry at every episode of Call the Midwife!
I really admire all you strong ladies having such a tough time.

Ellen snap to being allergic to the dressings. They drove me mad too especially the ones for the underarm. Got really sore and I was left with dressing shaped sores for weeks after the dressings were off. The sensitivity seems to have got much worse during treatment and now even the little plasters they put on over the port or after a blood test cause a red mark even if the plaster is only on for half an hour.

Trumpton That cushion looks amazing and I wish I had one after surgery, would have been so helpful.

Double about the no crying. I think you can end up really numb about it all. I find now that I can burst into tears about nothing at all but not really about the cancer. The bolding is really easy. You just put * immediately before the name and immediately after with no spaces. It doesn't matter though. Your posts will still make sense without the bolding.

Popping on to say hello to everyone, what a friendly bunch! If you don't mind I'm going to take a seat for a while in the purgatory zone... a couple of years ago I had a 10cm galactocele (milk cyst, about as glamorous as it sounds) which came on all of a sudden in my early days of breastfeeding, but started as mastitis. So when I began to get a similar hot sensation with pains a couple of weeks ago I went along to my GP, who sent me off with antibiotics and a referral to the breast clinic given my history.

Duly turned up to that appointment and they found a cluster of cysts where I was experiencing the pain, and took three biopsies as a precaution (still recovering from the discomfort there!). But I'm not entirely sure what I am to do now - there was supposed to be a MDT meeting yesterday and I'm not sure how long I should wait to hear anything back, or indeed who I should contact. I'm going to see if anything pops through the post next week but if it's ok with you all, I'll stay here in the meantime!

Hope everyone is having a lovely Friday - absolutely torrential rain outside here at the moment so I've no intentions of venturing outside!

BreastofIntentions (what a brilliant name) hello and welcome, hope you get results soon and that there is nothing bad going on. Did they tell you who would get the results, I'd assume your GP would get a letter but I don't know if the hospital would also contact you directly. I wouldn't wait a week if I were you, why not give your GP practice a ring in a day or two and ask if they have had anything through? They should be able to tell you what the usual mechanism is anyway.
Doublethecuddles good to hear from you and I'm very pleased that you had a relatively easy time so far. Hope the consultant appointment in November gives you all the information you need and that your lymph nodes behave themselves in future!
Sympathy to all those with breast cancer who are coping with painful dressings.

meercat23 skap catnidge bloodybridget WTF99 Zorgoand anyone I've forgottten

Seems all is okay and they are cysts.

Can't thank you all enough for your kind words and wish you all love and a healthy way ahead.

nelly utterly delighted for you! Have a fantastic weekend.

Lovely news nelly
How uplifting to hear your news !

Bloodybridget - it’s 4 weeks because it’s an absolutely state of the art test. They have to grow it (which is what takes the time) and then analyse it on the machine that does the most sensitive readings. Even though I’m seen in a major teaching hospital, they don’t have one and the sample has to be sent to another. Then there’s time for all the right people to review the results.

The other tests (FBC, liver, kidney and bone function - all of which were normal) take no more than 24 hours (and in early days of treatment FBC was done whilst I waited and took under 30 mins).

Nelly so very pleased for you

Oh, I think that grin wasn't quite the effect I was hoping for. Perhaps instead?

Hurrah @nellysephalent! Terrific news!

OK I understand, iVampire . Great that they have the technology to do these tests, but hard for you to have to wait so long, I'm sure. The Patience Inn is open all hours!

I've just lost a long reply due to fat thumbs

zorg I never knew how they carried out the mri for breasts. What a revelation.
I get anxious about cannulas, well done to you for getting through today.

vampire I'm impressed by the marathon run. Four weeks is a long wait for test results even when you know why it's so long.

nelly that is fabulous news. What a relief.

breast pull up a comfy chair whilst you wait. Hopefully you will get news early next week.

Bridget my knitting makes those Extra Slice cakes look classy!

Hello hello hello!

I'll read back in a minute- I've been AWOL because I'm sick of people dying, basically, and I've been trying to forget about this whole bloody cancer thing. It doesn't help that October is basically the most irritating month in the year for women with the 'wrong' kind of breast cancer who won't recover and move forward into broad sunlit uplands etc etc.

But I'm ok, and putting one foot in front of the other, like you do.

I've had an abnormal smear. And I know that's nothing compared to some of you, because I might not even have cancer. But I'm scared that I do: my mum died of cancer when I was younger, and most of my relatives have.