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! :)

I'm so sad to read that there are so many of us here having an especially tough time right now. Love to you all. The thread has been moving quite quickly and my addled brain is finding it difficult to keep up.

Leslie, I hope you get some relief and start to feel better soon.

Fluffywhitekittens, DS took it well, much better than I thought - I cried, he didn't! We are heading towards the first anniversary of his dad's death, which has been on his mind. He has been 'looking after' me, which makes me sad too, because I don't want my 8 year old to be burdened by caring, but I can see that he wants to be useful too. The psychologist I saw gave me a Medikidz comic strip book for him, which we looked through together, and it was much more helpful than I expected!

I met my lovely surgeon again yesterday, unfortunately I am in for a full node clearance which I'd hoped to avoid, but I understand and accept why it's necessary. BCN was positively swooning about my plastic surgeon too, telling me how brilliant he is. I know I am lucky to have a tremendous team. Although I'm not forward to meeting the oncs to have the chemo discussions - surgeon has already warned me they will come at me all guns blazing to have it. That is in the future though, and for now, I am trying to get sorted for next week.

It is such a beautiful frosty day today, and I feel absolutely FINE physically - hard to accept what stupid cancer is doing inside me.

Hugs all round xx

Hope you feel a bit better soon Leslie
Sorry to see so many new people here . Stick around though as it is a good source of support and we even have a laugh at times
I had rads to my neck yesterday and have not been too good since then. My face is swollen with painful lumps under my ears and I slept very little because of the pain. Spoke to an onc yesterday and hospital will call me back today to see how I am.
In other news I may be getting retired due to ill health which makes sense as I won't be going back. It will feel odd being a 'pensioner' but as I tend to move like an old lady now perhaps it's fitting. Hope everyone has a good a day as possible.

So sorry to hear that you're not too good Leslie, hope you're on the mend soon.
Had my endometrial biopsy today, but the gynaecologist didn't think she got enough of a sample so it's likely I'll have to go back for a hysterectomy. To think that up until three years ago I'd only been in hospital to have children!

Sorry to hear that wee I hope you're not in too much pain now?

chewing ouch! I hope it improves soon

Flippy glad your DS took the news OK

Mybloodykids I hope your appointment went well and that you've got a good plan

pepper sorry there's so many other things to think about! And good luck for the ultrasound

LaaDeDa my cetuximab causes an acne rash too. Oh the joys of cancer treatment eh!

I'm feeling a little better. Even managed some lunch. Now nausea is starting to return. Hopefully the nurse will appear soon with my ondansetron! The pain is a bit better at the moment. I've seen my specialist nurse and she's not panicking, so that's good. But she is taking it seriously and won't let them discharge me until the pain is sorted. My surgeon should be coming to visit soon. Hopefully they can work out WTF it is. And hopefully it's nothing scary...

Hi again, this thread is moving fast so hello to everyone and plus for everyone, if you can stomach it!
Leslie hope they can find out what's causing the pain and it's easily solvable.
Wee and chewing hope the pain goes soon.
Flippy and mybloodykids I find the affect on my DD really hard to cope with. She's only 6 but has asked lots of questions. I used the Mummy's lump book, specifically for breast cancer but I think the language used and explaination of chemotherapy and radiotherapy was really well written.

I found out today my appt with the oncologist has been brought forward to tomorrow and chemo starts next week.

What would you ask?? I want to ask about the possibility of a PICC or port as I have such problems being cannulated. Obviously finding out what type of chemo I'm having, length of time, possible side effects.

I know I'll go in and my mind will go blank!

Leslie hope they find out what is causing it.
I have had a blinding headache and been sick. Felt absolutely terrible so called the hospital. They don't think it's related to the rads so I'm seeing my GP to get it checked out.

Half baked I had an appointment with a nurse in the chemo ward before treatment started and she answered all my questions. Could you perhaps visit before your treatment?

Oh chewing you're having such a rough time of it. I hope the GP can sort it out

Halfbaked that's good news :) sorry, I can't think of any useful questions!

wee that's a bit of a blow, surely trying to get a better sample is the first thing to do. I've had the hysterectomy conversation a couple of times because of endo thickening. So far my biopsies have been ok but they won't look again unless I have more bleeding. I can ask for the surgery at any time, I'm pre approved now. It's a difficult decision, are you ok about it? I hope it didn't hurt and you managed to meet your friend.

leslie I hope you continue to perk up and they get your pain sorted and kick you out soon.

chewing sorry you're suffering yet again. How often do you need the rads?

royal how are you holding up? Sorry I've lost track, when is your mri?

It's awful to see such a lot of real suffering going on here at the moment, this is worse than anything I've seen in 2 1/2 years. Sorry you're here to all the new arrivals, I hope you get some answers and support. There's a lot of talk of anger which I absolutely get. Of course we are all frightened but the anger at having to face this and the pain it causes our families and the way it robs us of a carefree future is absolutely valid. I'm extremely angry still that when I look to make future plans I have to consider my health now. It's not bloody fair. I feel like I still can't as much as book a summer holiday until I have my annual check up in April just in case. However, I do realise that I'm lucky in a way that I am at least able to consider that so apologies if I'm being insensitive. I just really feel that anger is a huge part of this and don't let anyone tell you otherwise.

Hello lacies. I agree these are rather down days. I truly hope they pass fast.
Pepper it is probably a combination of anxiety and stress due to my latest follow up. mrs I have two procedures coming up next week: an MRI to my pelvis on Monday to check what that "lesion" exactly is, and I should be having a biopsy of my left axilla to check out that lesion. I manage to keep busy but well a lot is going on inside my head.

Hi,

Will catch up later, but I got my results for my breast cancer. Nodes are free, but it's triple negative.
It feel a like I've been handed some sort of death sentence because it will come back.
Am I over dramatising there?

Sorry to hear so many folks are going through tough times right now chewing and leslie you are especially in my thoughts just now and hope you both start to feel better soon.

royal sounds like you have a busy week ahead and of course then there's the wait for results. Really hope that they don't find anything nasty.

mykids that's great news your nodes are clear. What makes you say it will come back- was it something hinted at by your team? Hopefully they'll have a treatment plan on place to stop that happening

mrs I totally understand the not wanting to book holidays. We didn't have one in 2014, got to see family in Ireland the next year but 2016 was a write off again - I haven't had anything resembling quality time off for 18 months now :(. But we're on the verge of biting the bullet and booking a holiday over easter - that's if the insurance quotes don't come back too silly!

halfbaked I would just go in to your appt with as many questions as you need. Definitely raise the subject of vein access and see what they say. First time round I had chemo before surgery so they could use both arms. This time they can only use 1 and my veins have been wrecked by the chemo so they offered me a port without me having to ask.

I haven't been able to catch up with everyone but I hope that those going through dark times right now will start to see some light and more positive thoughts

First - apologies, autocorrect overtook me, they'll want me back in for a hysteroscopy, not a hysterectomy. That would be a bit premature!
My cancer is triple negative too (although my oncologist did put me on hormone therapy - even though my score was 1/8, which confuses me) so I can sympathise with the fear. They are doing lots of research into triple negative so it's not necessarily a death sentence.
I'm sure I remember amberlight saying that for TNBC, if there is no recurrence at 5 years, the odds are the same as for hormone +be types.

Hello lacies - just a quick question (Leslie said I could!). Having a contrast MRI tomorrow morning - is there anything I should be aware of? Are there after-effects? Thank you! Hugs to everyone.

Argy. I've never had any reactions. Feels somewhat like bein filled up with warm water like a hot water bottle before... or also a bit like I'm weeing my pants sometimes. (Chest MRI or ct unknown agent) but didn't even notice the contrast going in during my breast MRI last time.

Best wishes. Xx

Thank you Isadora! I hope you are feeling ok. xx

tutti I don't know what to say as I missed the comments that you refer to. However, I do remember that in the immediate aftermath several of us were asking after you (as you weren't posting) as we knew you were in the midst of treatment and were concerned for you.

I personally looked forward to your posts on this thread as you would often make me laugh with your take on things.

I don't know whether you feel safe enough to continue on here but I would be very pleased to see you back.

tutti, as minty has already said I also completely missed this as I've been checking in much less recently and to be honest if I had seen it I wouldn't have thought anything of it. I always found your posts very interesting and often funny, that's quite a gift on a thread like this so I miss you.

I don't know if you've been reading recently, there are some people struggling badly with difficult news. I wouldn't like to see this thread heading into the chaos it did a while back when so many people need some support. I don't know what the answer is, you're obviously very angry and upset.

You must do what's right and safe for you but I'm sure many of us would love to hear from you again.

What Mrs and Minty said. Tutti I hope you are ok, this thread is a safe space for support. I have also missed you from the thread because your posts always made me laugh, and cancer patients are allowed to laugh too. There's so many people going through such awful times on this thread, and there is a place for everyone.

I hope you are ok, this horrible disease takes its toll mentally as much as physically. I know that many cancer centres offer psychological support, and indeed I am going to be having a few sessions in the coming months to hopefully help with my concentration. I went for a complementary therapy at my hospital yesterday and it was lovely. I had reflexology which was helpful because I still have peripheral neuropathy 7 months after my last chemo.

Contrast MRI - you may feel slightly sick when they pump the contrast in, but (for me) it didn't last long, and there weren't after-effects. Apart from that, you've got the usual fun 'n games of being inside a pneumatic drill for 40 mins (or so it sounds...). Hoping it all goes OK, ArgyMargy

tutti As the others said, I missed your comments and hoped you were doing ok with the treatment.
There is a lot of tough news on here at the moment and to all struggling right now. I had counselling from mid chemo when I mentally hit rock bottom, until after I had returned to work and despite being a little sceptical before, I found it enormously helpful and it played a major part in my personal recovery. I know our regional cancer centre offers free sessions so it is well worth asking them or your BCN if you think it would help. Don't wait for rock bottom
leslie and chewing I hope you are both feeling a little better today.

Tutti I missed your post too?
I believe that it was your posts about being jabbed many times for a vein that gave me strength when I was prodded for veins before my port surgery.
I have missed you.
My son is disabled - blue badge etc - but we try not to get offended at every random comment unless it's a direct piss take of our son or his peers.
I hope you feel ok to come back - it's does seem very busy on here and your experiences are both helpful and humorous during quite bleak days xx

Sorry to post again.
I'm very scared, and google has made it worse.
The cancer isn't in my lymph nodes, and is technically removed, but it is triple neg, which the dr said has no treatment other than chemo, and often returns.
I actually feel like killing myself right now, just to stop the endless waiting for it to return.
My DH is cross because he felt the Dr went to far, and the Macmillan nurse said after she felt I had been painted a very worst case scenario, but now I just think my life is going to be chemo, 5 minutes free, recurrence, chemo etc etc.
I am probably having the genetic testing for BRAC which may lead to a double mastectomy and ovary removal, but for someone who has been told they technically don't have cancer I feel incredibly bleak.
I came close to a panic attack last night, and really I don't know what to do.
The nurse is trying to get an appt for oncology for next week to get this going, and I hope he might be a bit better at allaying my fears.
I'm already fairly young, fit etc so I can't even radically change my lifestyle.
I am like a nervous wreck right now

Halfbaked, great to know your chemo is happening sooner. I liked the questions listed here:

m.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/chemotherapy/questions-to-ask-about-chemotherapy

Also I was looking at PICC covers -- Limbo seems popular; think you can also order from Amazon

livebetterwith.com/products/limbo-adult-elbow-picc-line-cover-m65/?gclid=CLH9o_iWrdECFYc-GwodMvwEeg

I have terrible veins, so I was prepared to fight for a PICC or port (had read thomcat's post here: forum.breastcancercare.org.uk/t5/Younger-women-and-families/Chemo-PICC-line-or-cannula/td-p/824167)

ArgyMargy, super detailed answer but here goes. For my breast MRI, I thought I'd be lying on my back like people do on medical TV dramas. Instead I was on my stomach with my boobs hanging through holes, with the MRI tech 'scooping' around them to make sure they were clear and dangling freely.

I understood why the instructions said not to wear eye makeup your face gets squashed onto a doughnut ring covered with towels (like in a spa when they massage your back). I wore plain leggings with no metal studs/zips, so I got to keep those on good to have as the room was cold. They put blankets on you as well.

The contrast dye made my bladder area feel mildly warm, a bit like I had wee'd as Isadora said. They warn you about it over a speaker system, and it's only a few seconds.

I had two bouts of very bad vertigo years and years ago. At one point during the MRI I felt like the vertigo was starting up nausea, dizziness, headachey, panicky, heart-racing feeling but it was only for a bit. I read later the magnetic forces can make the little hairs in the inner ear that are responsible for balance move around, causing a similar feeling to vertigo. But many people don't feel it.

They made me wait in reception after the MRI before they took the cannula off, but then forgot all about me (NHS). I just asked someone at the desk after ~30 minutes and a nurse came out to take it off.

Leslie, Wee, chewing, hope the pain goes down / gets resolved soon. to all

Trying the link about PICC again: forum.breastcancercare.org.uk/t5/Younger-women-and-families/Chemo-PICC-line-or-cannula/td-p/824167