Crack open the wine... it's CANCER SUPPORT THREAD 61!

[WhatWouldLeslieKnopeDo]

Some of us have been here a while and others have only just joined. If you're lurking, feel free to say hello. We are quite friendly really.

You are welcome to join us, whatever sort of cancer you have, or if you're waiting for tests to find out whether you have cancer or not (we hope not!)

Our previous thread is here. Do check it out if you're new as there's lots of useful information in the first few posts.

Best wishes to everyone who finds themselves here

Thanks Leslie Back but that nearly killed me

Hope your blood test goes well.

Oh dear! I hope you can sleep this afternoon

My blood test was fine thanks :) no further action required. Phew.

Happy Friday everyone. I hope you're all doing as well as can be :)

Glad your blood test was fine Leslie

Starting to feel more human now - think I've gone quite anaemic again and embarrassed myself at work. Our Chief Exec James came over and said to me is Anne here I said no Anne is talking to James then hmm no you are James hmm no Anne is talking to John. The Chief Exec just laughed and said its easy to get us mixed up and I said well you both have names beginning with J .

Hi all, it's lovely to see you all supporting each other so well I love this thread for that reason.

I'm sorry I'm not as active in the support as a lot of you but I do think about you all.

My tumour markers have increased dramatically so half my thyroid and the lesion/mass is going beginning of May. I've got my pre op next week so will discuss if they need to use a special protocol as anaesthetic can be dangerous in Neuroendocrine. I had all the precautions when I had my bowel surgery and they were like a magic medicine as they turn the tumour hormones off.

Took DD to the gp as the hospital dr suggested. He was ok but went on about how they've told me to see him so the hospital don't have to pay for the tests and he gets this all the time. He needs to see the histology from the lesion to know what that is first then went on to say there will be nothing wrong with her, he can't refer her to a paediatrician for this reason (persistent lymph nodes) as they will reject the referral and he can't do a chest X-ray as they won't risk the radiation (the hospital dr was wondering if her shortness of breath is due to lymph nodes in her chest).

This is the problem when parents mention something at the hospital that isn't related to what they are there for, well she was being seen for a suspicious lesion that they wanted removed quickly and having a general anaesthetic I felt mentioning neck lymph nodes and shortness of breath would be my duty!

I can kind of see his frustration but also understand she was being seen by a plastic surgeon for the lesion and they probably can't just run loads of tests for other things.

Anyway he then went on to examine her neck and found more lymph nodes than I had and then decided she needs blood tests however if these come back normal there will be nothing wrong!

He's the same gp who dismissed my symptoms for two years so I don't have a lot of faith however after trying to get her an appointment with another dr and failing then booking a week in advance and still only appointments with this dr were available I decided to just book it.

Anyway I'm sure she'll be fine, I would hope I would have a feeling something wasn't right if it was serious. I wonder if her hormones are kicking in and sending her body a bit haywire but we'll see.

Take care and I'll try and be better at posting more.

Sorry that is so long and a real moan feel free to skip!

zebra must be really worrying. Hospital protocols drive me mad sometimes. Hope your dd is fine.

Leslie glad blood test was fine. at your parents being related. Do you have lynch's syndrome? Yes tabs are capebitine and so far not too bad (touch wood). Just a bit if sickness but I have all the drugs and lots of crisps Actually thinking if this cycle continues to go ok I may be able to go back to work on treatment - at least part-time.

Penguins at work error but sounds like something anyone could do. I'm finding the tiredness a killer too. Went in for a couple of hours yesterday and couldn't remember a lot of words. Then had to rest all afternoon. I may ask to have blood transfusion on Monday. I was offered at last appointment but declined as Hb just above 7 so above their threshold. However feeling so shit now i'm happy to go for it.

TQ and Leslie can you lock my mum in with your relations? She decided that my estranged father, who I haven't seen for over ten years and has never met his grandchildren, absolutely had to know about my cancer and took it upon herself to tell him despite me asking her not to. He has mental health and substance abuse issues and form for posting weird stuff on social media and doing mad things like showing up out of the blue. Thanks mum very helpful .

Meant to also say welcome to Mrs Potter. Waiting is the worst. Hope you don't have to wait too long for tests. If at all possible avoid Google!

I have had 5 naps today. Very odd but at the same time very luxurious. I just keep dropping off. 1st time was at 11am when the DDs had all gone out for the day. It's gone on since then... slept through James Martin doing home-made fish fingers, Commonwealth games, Pointless and whatever else was on just now. I know the TV is crap but I'm not generally this bad.

likeazebra sorry you're having so many troubles with your dr and of course you're worried about your DD. Keeping everything crossed for you.

Tayto Jeez... relations. I just don't get why all of sudden we cancer patients simply don't have a mind of our own any more and everyone else knows better than we do... My DSis' latest was to invite me out for coffee after chemo - she seems to think chemo is the equivalent of going to get your hair done and that I come out wondering what to do with the rest of my day...

TQ do they count as distinct naps or is it more of one long doze? It sounds like you needed it anyway :)

Tayto I have FAP, which is similar. I'm glad you have medication and crisps, and it sounds promising that you're considering being able to work a bit. I hope you continue to feel alright

zebra it sounds sensible to get the thyroid lesion removed, though sorry you've got the added complications with anaesthetic. And grr at all the complications with DD and the GP. Of course you were right to mention other potentially-related concerns - it would've been awful if you'd not said anything and she had awful complications! Fingers crossed for her blood tests. But I would've thought shortness of breath should be investigated either way. I hope you can get her to see a better GP soon

penguins I hope you can get on top of the anaemia quickly. I'd be replaying that mix-up for ages, but I'm sure they've already forgotten it :) it's difficult when you've been out of the real world for a bit.

I hope everyone has had some sunshine today

Thanks all for the welcome!
I have tried to read the posts but tbh it's like trying to read a foreign language!!!
I am away for the weekend so have just texted to find out if there were any hospital letters today and no , nothing. So phone calls on Monday - we are also waiting for a referral for DD for possible epilepsy

Hello lacies. I haven’t been here for a while but hope I may be allowed back... Hello again waves to elephant mama Leslie, Mrsrhod, royal mama, mysillydog and boobz and all who were posting here a couple of years ago and nice to meet you waves to all.

I had bc in 2015/16 and the support here was so fantastic. I was discharged to annual mammograms and tamoxifen, as my case was v straightforward and prognosis fine after walloping the lump with surgery, chemo and radiotherapy. Annoyingly my mental health hasn’t been super since (which is partly why I haven’t been checking in here often, though I think of this thread and the people on it so often). I’ve felt very ashamed about that.

Anyway, I now have a new lump which turns out to be a recurrence- got the biopsy results last week. It’s in exactly the same place and I can’t have any more radio so it’s looking like a mastectomy this time (so long as other scans are clear, I guess). It hasn’t quite sunk in yet though the whirlwind feeling is familiar!

If anyone has any top tips on mastectomies I’d be v grateful.

I’m going to go back to the beginning of the thread to catch up with everyone’s situations to get more updated. Is it ok if I just pop in occasionally?

Hope the sun shines on everyone today.

Hello Grismo, so sorry you find yourself back here, and also that you feel 'ashamed' of your mental health troubles. I don't believe anyone is ever the same after cancer and the mental struggles can be very debilitating. Can you access any counselling via Macmillan?

I'm ovarian so can't help you with anything on mastectomies I'm afraid but others will be along soon.

Oh Grismo it's lovely to see you. Have an elephant hug. But fuckety fuck that it is because of the cancer rather than because you fancied popping in for a chat

Fingers crossed for your scans and that you can get the mastectomy done soon.

I'm really sorry about your mental health though. That's a completely normal and understandable response to all you have been through. And it's certainly nothing to feel ashamed about. Please don't feel you have to hide anything here. Whatever you are feeling there is almost certainly someone who will have felt the same, and even if not exactly the same we all understand that this a complete headfuck and will be sympathetic and provide hugs/tea/whatever is needed.

Of course it's OK to pop in whenever you want to. But please don't feel you have to catch up with all the previous posts - you'll be there hours!

Mrspotter it certainly is a foreign language, and hopefully not one you will need to become familiar with! :) it never rains but it pours... I hope you hear back quickly from both referrals

Sending love and sunshine to everyone. The sun is just trying to peek out from behind the clouds here and it is nice and warm.

Hello grismo I'm really sorry you're back with us, that must have been such a shock after being given a good prognosis. As TQ says I think we all struggle mentally to different degrees so please don't be ashamed or think you are in any way different. I hope you get your treatment quickly, have they told you if you'll need anything other than surgery?

Yorkshire is warming up slowly, we've been threatened with 22 degrees later this week. Not sure my pasty limbs are ready to shed their winter layers.

Had massive heavy chest pains on Friday which just left as DH thought was fine and I had enough of hospitals continued on Sat so phoned 111 and they sent an ambulance. Just back now kept in overnight but all clear thankfully. I liked when they asked if I had a dog and I said no a cat and they said is the cat likely to attack staff. 😂 Felt very young there, one was 96 and youngest was about 80, the 96 year old kept insisting she was going home and trying to escape.

Grismo so sorry to hear you've got cancer back.

Hope everyone else is OK and as nice a weekend as you can.

Crap penguins glad all clear. Liking the idea of the attack cat!

TQ yes relations - who'd have them! at coffee after chemo - what was she thinking?!?

Grismo I'm a newbie so we've not met but hello. Really sorry about your reccurrance.

Leslie thanks -the diarrhea seems to have started now so may have to up the crisp dosage -or do the boring BRAT diet. They tested me for the genetic linked causes but I didn't have any - just bad luck. Hopefully that means less chance of my sisters getting it though but have ordered them all off to get tests.

Waves to grismo ** I'm newish here too, I have cervical so not much use to you. Hopefully someone will be along soon with some advice. I'm going to York on Thursday for a few days before getting my results back on the 24th. I'm absolutely dreading what they're going say

Good luck to everyone waiting for tests/results

I did say our small tabby cat has attacked people with one paw but she normally just hides and apparently ambulance could risk that, they sent me two very brave girls out. Felt sorry for the girls they were doing the 7pm to 7am pub drunk fight shift and both very attractive so would imagine they have problems with drunk men so they were probably happy to be allocated my very dangerous cat.

Think its always worth getting relatives tested / alert though hopefully all clear but catching these things early makes such a difference.

Purple Hope your results are OK.

Hope everyone else is fine. I am feeling better but bit exhausted, going to try and get them to test for Lymes from last August as that's when I became more ill and had a funny bite from rainforest. I have asked before and just got the are you crazy response which I am but I am also pretty desperate now 😂

Good morning on this beautiful sunny day. I have had some progress since I first posted. I found out I have stage 3/4 cancer with the primary site being the bone and the secondary the large mass in my pelvis. I am waiting for output from the MDT today for a treatment plan.

I freaked out when I heard and had a bad day but have been back to my smiling positive self since. How do you cope when everyone around you tells you how strong you are? I need one person to recognise that I may have a day when I'm not being strong. My husband is fabulous but worries and I hate to stress him out more. My parents are hugely supportive but rely on the practical rather than the emotional to demonstrate their support. My best friends are not local. It's tough.

Sorry not to reply to everyone individually, it's hard on the phone. I do read every reply and feel every test, needle prick and doctors visit. This thread is invaluable for those of us new to the 'journey' so thank you for sharing. I hope everyone has sunshine today and manages at least a few minutes of vitamin D top up.

Morning folks, sitting waiting for the post - trying to keep my eyes open! I'm so tired!
I hope everyone is having a sunny morning!

Just got the letter. The consultant, who read the referral letter, doesn't think I qualify for the 10 day turnaround so has put me on the urgent waiting list. As such they will write to me 6-8 weeks before my appointment is due. There is no ballpark figure as to when i might get that letter.
Feel queasy and a bit upset. Am I overreacting? The consultant hasn't seen my boob or felt the lump? Or has the gp scared me (poss by me reading more into things than are there....)?????

Got a cancellation for a week tomorrow! Can anyone tell me what happens at a first appointment? Thanks xx

Hm I'm not entirely sure Mrspotter but I would not be happy being "downgraded" without even an examination. Can you go back to the GP for further advice? The GP has to refer because they can't be absolutely certain what a lump is without doing tests, but they can often have a good idea of what it is just from the size/shape/feel (this is not foolproof though!) so they might be able to reassure you that they think it's more likely to be harmless. One of the breast cancer charities like Breast cancer care might be able to advise on what your rights are in this situation. Sorry none of that is particularly helpful

Swaying good you've got more information to work with, but sorry that it's absolutely definitely cancer. I hope you cans get started on your treatment plan quickly

I roll my eyes are the "strong" comments, or say something vague about having no real choice. Nobody chooses to get cancer. And it's not like we can say "actually I don't want cancer, thanks" and send it back! We just have to muddle along as best we can. I worry that some people feel they have to put on a strong face all the time even if they aren't feeling it, which might lead to a worse reaction further down the line it's almost a way of shutting someone down really as if you go on about how strong/positive they are then they will feel less able to share the negatives, which is certainly easier for others to deal with! Some people find discussion of illness/emotions etc very uncomfortable and will do anything to avoid it.

Try to lean on your husband sometimes though. You're at the centre of all of this, and it may actually help him to be able to support you. At least then he knows he is doing something. Are there any locals support organisations? There might be a specific one for your cancer. Also Maggie's, Macmillan, local hospices etc often have various groups if you want to talk to someone.

penguin sorry you've been unwell again. Hopefully you'll get a definitive diagnosis soon rest up today I'm sure your attack cat is a million times preferable to fighting drunks!

purple I hope you enjoy your trip to York and manage to relax a bit while you're waiting for the results

Tayto that's good that you don't have any of the dodgy genes. I am the first in my family to have it, which is a relief :) yuck to BRAT diet. Medicinal crisps are definitely the way to go! I hope you feel better soon both the drugs can cause diarrhoea so make sure you take all the medications and stay hydrated and follow any advice your team gave you

mrsrhod 22 degrees sounds lovely! I actually had to put suncream on the other day, which made a nice change from bundling up in coats and scarves. How are you feeling now?

I hope everyone is having a nice Monday. I've been vaguely productive so now I'm going to knit for a bit. After a grey start it is quite sunny :)

Oops sorry I cross-posted. Excellent news about the cancellation! So please ignore my ramblings :) I've never been so hopefully someone else can fill in the details of what to expect.

What to expect at a breast clinic appointment