CANCER SUPPORT THREAD 58 - New thread, new year, but the lacies are still here! Please join us if you have any sort of cancer, or are waiting for test results

[WhatWouldLeslieKnopeDo]

Happy New Year! may 2017 bring health and happiness to us all

Welcome to oldies and to newbies. If you've just been diagnosed then this is the place for you. And if you're waiting for test results then please pull up a chair. We will hold your hand while you wait, and hopefully we will be able to send you on your way soon enough. If it isn't the news you hope for then we will be here for you.

Our previous thread is here

Following on from royalmama's suggestion (see, you're not just famous for typos!) I have compiled some of the excellent advice from the previous thread and I will post it below. I've divided it into sections to make it a bit more manageable. Please give me ideas on how to make it better for the next thread! :)

Waving back to 1234 how are you?

Goingtobeawesome good luck with your GP when is your CT? I hope there's a harmless explanation for your symptoms

balkan welcome :) bastard cancer indeed. I hope you get some answers tomorrow

I hope everyone is having a good weekend

Thank you WhatWould. not planning on ringing gp tomorrow. I have another appt I can't miss so will ask the nurse what to do in Tuesday. Every time I move I feel sick. Still have bowel issues. GP checking for a brain tumour I suspect but the main symptoms, and ones I had first, are for a NET. GP said three to four weeks for an appt for the brain ct.

Ah, fair enough good luck with your appointment, and I hope your nurse is helpful tomorrow. What are your symptoms? And what type of NET do you think you might have? It's natural to imagine the worst case scenario, but there are probably plenty of less scary possibilities too I hope you get your CT appointment soon

Happy Monday lacies! I am feeling quite good as I did my free Macmillan exercise DVD this morning. It's quite gentle.

Balkan I think the speed is one of the most shocking parts - no time to get your head round what's just happened as the next thing is about to start and you need to get ready for that. Very difficult to find breathing space.
awesome best wishes for your appointments.
leslie well done for doing an exercise DVD.
I had my "cancerversary" yesterday, exactly a year since my diagnosis, somehow it feels like forever ago and no time at all, at the same time.
Today is my birthday and it's certainly been a better one than last year! Pilates this morning, the house to myself for a few hours then chaos when the kids get home

Happy cancerversary for yesterday and happy birthday for today pepper here's to many more, and to a much better year than the one you've just had.

Enjoy your peace before the chaos begins!

WhatWouldLeslieKnopeDo thank you! And what a great start to today - exercise! :) I miss my weekly 8K runs.

Goingtobeawesome, good luck tomorrow. Are you still feeling nauseous?

pepperrabit,

Rang the nurse this morning to clarify, apparently, my treatment plan will change in the light of the genetic test (BRCA2). At my next appt. (in 10 days' time), pending on the pathology results, if these are negative, they will go into a full-on bilateral mastectomy mode (within a month, so probably end of March, something like that). No radiation will be given, but they will give me hormone tablets to take until the surgery. Am happy with that (no idea what the plan is if SNB is positive, still crapping myself majorly if that's the case) - anything to stay alive and outfox the bastard.

DH thinks I should have more time to think, but I have made up my mind, it is set in concrete. Doesn't mean I will still not "mourn" my breasts, etc., but I don't want to live with Damocles's sword hanging above my head for the rest of my life.

And no, I don't want any reconstructive surgery. Can't be arsed. Don't want any "reminders" of what used to be on my chest. Prosthetics all the way.

Still crying about 194586 times a day but equally, there are times when I think yep, I will win.

WhatWould - stomach pains, flushes, nausea, loose bowels, flushes, feeling full after small amounts of food, lost weight. All seem innocuous but I know my body and this isn't me.

Thank you pepper.

balkanscot - still feeling very sick and like I could pass out at any moment. Loose bowels too. Then this morning was distracted by the cat and smashed my head on the car boot. Hope the tears lessen. Good you've made your decision and are secure in your choice.

Just having soup then taking AwesomePuppy for a walk.

My Nana couldn't be bothered with reconstruction "not at my age Going" and had something to put in her bra.

Baubles, hope you’re comfortable and recovering well.

How are you getting on Minty – head any better?

Leslie, thanks for asking about my DS – he has been nothing short of amazing over this past year. I think and hope he’s ok, but I guess I’ll never really know. I’m not spotting anything with him that makes me anxious, he wants to be with me as much as possible, but that’s to be expected I think. I feel sad for him that his childhood has been so screwed up by bastarding cancer, but he’s doing brilliantly.

Good luck with the surgery Argy. No need to apologise!

Hello Balkan – this is the best rubbish place to be! Totally understand how you feel, but it sounds like your cancer has been picked up at a fairly early stage and the medics are going to have a damned good go at annihilating it.

Awesome, I hope you get some answers soon and you can get some help for your symptoms.

Happy Birthday Pepper! Hope you’ve had a nice day and a good time with your kids.

Quick question – are all breast tumours genetically tested? There’s no previous history of BC in my family and no one has ever mentioned it to me. I have my pathology reports and there’s nothing on either of them. I have my first appointment with the oncologist this week. Annoying that there’s been such a wait for treatments, appointments, etc, but almost here at last.

balkanscot good you've had an update and that you are happy with your decision. I think I would be the same, wanting to just get it all sorted.

Goingtobeawesome that doesn't sound much fun! I hope you get some answers soon :)

Flippy I'm glad your DS seems to be taking it in his stride. It's not fair at all there are two separate things: testing of the actual tumour's genes and then the genetic tests for BRCA mutations etc. Not everyone gets either of them. Your tumour would only be tested if they need the information to help decide on a treatment plan (it can help determine your risk of recurrence and whether chemotherapy will be beneficial). Generally only people with a strong family history of cancer will be referred for genetic testing. I had it because I have polyposis, so they knew I had one of several genetic conditions and then did the DNA test to confirm which. If they found a mutation, they would then offer testing to relatives. Sorry if you already knew all of this. I think they would have said if they planned to either type of test. And as they have already recommended chemo they probably wouldn't need to do the tumour test.

How is everyone today? I hope you are recovering well lookingforbaubles and that chewing is not feeling too grim

Can anyone recommend any hat websites?! I have some from Anna Bandana, but I am getting a bit bored of them. I just want something quite simple. Most of them seem to have huge flowers on and stuff. I always assumed I'd wear my wig most of the time, but my scalp is too itchy at the moment.

i finally managed some sleep last night after rummaging thru the kitchen draws looking for some decent pain killers ...i found some very old looking codeine!

only being being able to sit/lay in one position is very annoying, its really making me rethink having the reconstruction surgery

i am not a good patient - im covered in toast crumbs, have manky hair ....only another 3 weeks to go

nurse thinks I might have Miniere's disease.

lookingforbaubles eat more toast. Toast always makes the world feel better. Nutella and peanut butter. Yummm

Goingtobeawesome I completely agree with your Nana. I just want the absolute minimal amount of surgery (I hate those moments when you are about to go under the anaesthetic, I always think this is IT! Foolish, I know) for maximum effect (reducing the risk of bastard coming back by quite a bit). Sorry to hear about Ménière's disease, do you just have to ride it out or can you take any medication?

Toast makes the world a much better place. I made some this morning on the pretence that DS wanted it but I actually scoffed the lot.

lookingforbaubles, hang on in there! Since Friday I have discovered the magic of dihydrocodeine - wasn't so much in pain to take it but I have had trouble sleeping on my back only (never able to fall asleep on my back, EVER), so took one - wow!

WhatWouldLeslieKnopeDo sadly can't help you with hat websites, I am sure somebody will have a better idea than me. Yes, completely sure about my decision, I do hope 1.5 x 1.8 cm tumour is small enough not to have started to rear its ugly twin head somewhere else.

Feeling a bit as 12 February is the 11th anniversary of my dad's death (the one who gave me the mutated gene - he suffered from breast cancer, kidney cancer and prostate cancer which claimed him in the end). And my pathology results appt. is on 16th Feb. which was the date of his funeral. I have to STOP letting my irrational brain win on this one.

On the plus side: I am off work this week, so went for a long walk in the park in the rain.

balkanscot - only skim read info about it. Given how long I've felt like this I'm not sure it is what I have. Feeling very tearful at the moment. .

Sorry, pressed post too soon.

I understand the date issue. I'm stressing as something happened with dh this week a year ago and I'm in a similar situation again down to someone else being around. Also my birthday on Sunday .

It's fine. It's just a quirk of life .

Thanks Leslie. I know there are some genetic tests available for the tumours, but because I'm HER2+ and had more than 1 positive lymph node, I wasn't eligible - they think it's got a high risk of recurrence already. My hospital don't test for Ki67 or anything else as standard I think, apart from HER2 and hormone status. I have no idea about hats or wigs I'm afraid - another whole new world for me! I am considering some kind of semi permanent/hair integration system. It's pathetic, but I don't want to see myself without hair, more importantly, neither does DS.

Baubles, didn't you get any painkillers or advice when you were discharged from hospital? I came home with a bagful of stuff including morphine. Can you call your GP and ask for a prescription for the good stuff? I had the LD reconstruction, and I'm not sure I would have gone through with it had I known how painful it would be at first and how uncomfortable I still am. It's really hard to get into a comfortable position now, I can sleep on my back (just) or side with the help of many pillows.

Any tips from anyone to help with tight scars? I've been using moisturiser on the ones that are healed, nurse said only water based stuff for now, I have some emu oil too, but I've only been using that on the dry skin that hasn't been cut/broken.

Going, my mum has Meniere's, and there are medications. Did the nurse give you any advice?

Anniversaries are difficult, no matter how rational our brains our

Just diving in to offer hugs all round and I too would like to know about any awesome hats.

I did my photo shoot this morning. Great session - something I would never normally do but it occurs to me I'm doing a lot of things lately that I would never normally do. I'll let you know how the pics turn out!

FlippyNeck - the nurse said to have my brain CT first.

Really hope DS got the bus as I'm exhausted. Need to cook kids tea but I'm doing it as early as possible then getting in my dressing gown.

Hi all. Just a quick pop in as it's my birthday and I'm a bit busy.
Have most of you been given copies of your tumour histology/pathology reports? I've never seen mine so have asked for it now.

Happy birthday Chewing 🎂

Happy Birthday chewing! Yes, I've had copies of all the pathology reports so far. I didn't ask but was given the first one by the breast surgeon and the nurse went through it all with me. I was also given a Breast Cancer Care booklet about the report in case I didn't take it all in at the time (I didn't). I'm the kind of person who needs to know this stuff e.g. I look at my notes - they're about me so I think I'm entitled to read them. Then each subsequent report I have either asked for or been given without needing to ask.

Belated birthday wishes chewing I hope you had a good day. It's my birthday this week too. All the best people are born in February

I've not had a copy of any reports, but all my pathology results and a summary of my treatment are at the top of every letter my oncologist sends.

Argy fantastic that you've had the photo shoot. Also your surgeon and nurse sound really thorough :)

Flippy my advice would be to massage the scar for a minute or two when you apply moisturiser (once it's healed). My physio showed me to do it with my forefinger and middle finger together, sort of rubbing in small circles over the scar. She said it really doesn't matter what moisturiser you use as it's the massaging that makes the difference. I was lazy about doing mine and it's now quite tight. Not the end of the world, but a bit annoying. It's on my stomach and it is stuck to the muscle below, so it creates a sort of big dimple.

The hair thing is not pathetic at all. It took me a long time to get used to my bald head. I never recognise myself in the mirror! The semi-permanent hair sounds amazing. I hope you find something you are happy with :)

balkan I had to make an entirely different big decision recently. I knew straight away what I wanted to do. Then various people weighed in and tried to make me think about it longer etc. Sometimes you just know your own mind and thinking about it too much just muddies the waters :)

lookingforbaubles I hope you slept better tonight. Can you get a prescription for better pain relief?

Goingtobeawesome Ménière's disease sounds unpleasant, but preferable to a tumour so fingers crossed. I hope you get a definite diagnosis soon.

I'm seeing the oncologist later. I hope everyone has a good day

Hello lacies. A very happy birthday to you chewing wishing you all the best there is.
Sorry this is just a quick pop in!
Waving to all the other lovely lacies.

Just popping in very quickly first to wave to all lovely lacies and second to say Leslie, I had a really nice plain hat from suburbanturban.com. It was fairly ££ - I've seen the company described as 'the Boden of chemo headwear', how mumsnet is that?! - but soft and unfussy; I could just pull it on and be ready to go (to the sofa).

I've also heard good things about silk pillowcases for itchy scalps but don't know from experience. I always wore a hat in bed like some Victorian papa from a BBC costume drama.

Belated happy birthday to chewing and best of best to everyone in discomfort, waiting or worrying.

chewingawasp happy birthday!

ArgyMargy, looking forward to hearing about the pics.

Goingtobeawesome, thank you! Hang on in there, we'll get through these unpleasant anniversaries.

FlippyNeck - feeling more comfortable re: tight scars?

Today I have got it into my head that I must also have ovarian cancer. No symptoms, purely in my head. Bastard BRCA2 gene, what you do to my brain!!! "Only" 8 more days until pathology results.

Can't even pass any schoolchildren without thinking "Am I going to be around when DS is their age???"

I think I need a good slap, too.