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! :)

Unborn what on earth goes through these people's minds?! for you and your loss. And at hugely insensitive dog person. Brave is definitely banned. But we'll accept awesome :)

Coffee I'm UK too. The waiting is the worst bit, isn't it. I have my fingers firmly crossed for them just needing an extra look. I hope you manage to get some sleep tonight

Pepper, I was told that zoladex would be best for me due to my age (30s), although I am on exemestane too.

I was never told about ovarian removal. The thought of that really scares me: won't all of the menopausal symptoms be awful?

Rocket how are you?

MySilly and Coffee I am thinking of you. Hope you have been able to have a relaxing weekend, and the results are all ok.

Thanks for all your well wishes x
I'm doing fine after Friday. Operation seemed to go well if a bit longer than expected I think. Was in some pain on Friday and yesterday but nothing unbearable and I've had a steady supply of drugs.
It is really weird looking down and seeing a flat space - it makes my large tummy look even more huge now it's not hiding!
I've had one drain out today - that hurt - and hopefully the 2nd tomorrow.
It's all been very straightforward. I think I might go home tomorrow - I'd happily stay another night though as still feel a bit uncertain and tender. Nothing to do with it being like a hotel. No no no.
I haven't been given a comfee bra filler yet - maybe I'll get one tomorrow?
Very pleased it's been without too much pain or drama and really relieved such a big event is over.
I have only seen the dressings so far so I'm sure that will be emotional to come when I see the scar - but I'm ok.
Thanks for thinking of me x

Rocket, good to hear you're doing well. You'll be glad when the other drain comes out.

Coffee, Argy and mysillydog - thinking of you while you wait for answers/results. Well done for getting out for non medical reasons Leslie!

I hope your Candy's Hugs are giving you some comfort Leslie and Chewing.

Chewing, I'm sure you know this, but you are doing such a good thing sorting out the paperwork and admin for your family. DP was fairly well organised, so it wasn't too difficult when I had to do it, and the person who set up our life insurance and DP's pension was brilliant and sorted that out for me. But there was still so much that had to be done, he was a bit of a hoarder, and I'm still working my way though his things.

I've started to feel like I'm properly recovering this weekend - uncomfortable rather than painful most of the time now, as long as I keep up with painkillers. I've had a little bit of infection in some of the stitches, but they were re-dressed by the practice nurse and I've got antibiotics, so fingers crossed. I can get my arm straight up with a bit of effort! Worrying a little about some bumpy bits from my inner elbow and arm, but I'll keep moving and hope for the best.

Struggling with it all though - I don't think I've accepted what's happening to me, I feel angry, scared, pissed off and tired. It's a year this week since DP died, and I'm still not used to that either, although it feels like a lifetime ago. I keep feeling dizzy and have a weird pressure sensation in my ears, along with headaches - I'm sure you can all imagine where those thoughts are leading me. Someone tell me to stop being so daft!

Flippy
you have had a lot to deal with. I felt dizzy and had bad headaches due to an infection so hopefully that's causing your issues and you will start to feel better soon. I won't tell you to stop being daft because I too know where thoughts can take you but do speak to your GP if you still feel rough in a few days.

rocket glad you are doing well after the op.
for all those awaiting results.
I have chemo again tomorrow and have a list of things to do this week which will keep me busy

Good morning lacies.
Rocket, i am glad you are feeling alright and hope your road to full recovery is bump free!
Chewing, wishing your second chemo is as good as can be with the least SEs as possible.
Flippy, of course I totally understand how you feel having been there too. It is not easy nor should we have to act like it is. Hopefully as the fays go by it will get easier.
I have been given my sleeve and glove..not the extra accessory I would have chosen but it could have been worse. I do not have to wear it all the time or even that much thank God, only when I am very active, for travel and if I feel any aching or swelling in the area...it is so damn tight!

Good news from me. The hospital called me by mistake, there's no problem with my tests and I don't need to go in next week.

Great news mysilly!

Good news for me too.

MRI showed 2 lumps but ultrasound cleared them as benign.

Hope you're all doing ok.

I had one of those mysilly - everyone all relaxed at my mammogram and 2 days later an appointment through the post for 48 hours later! I rang my BCN in a tizzy and she reassured me that "we thought you wanted an appointment"... I cancelled it.
I have an appointment tomorrow for my DEXA bone density scan and another blood test while I'm there. Is it awful that after so many appointments I'm so blasé about them I haven't even read the instruction/appointment letter yet!

Brilliant news coffee, you can get back to life again now

Rocket, glad the surgery went well.
Coffee and Mysilly lovely to hear good news.
I'm on my 4th round of chemo and this lot seems to have wiped me out a lot more than previously, very tired.
We finally got the results back that I can have cetuximab next time round, which is good but I'm really not looking forward to the rash and side effects :( However we also had the family photo shoot and the pictures are really good. So glad that I finally got round to organising it (while I still have hair and no acne rash!)
Chewing hope your chemo went ok and not suffering too many side effects.
Leslie, when is your blood transfusion?
I need to get a bit more on top of paperwork, including wills and what we can claim for, taking pensions early etc. We have some life cover for the mortgage but it doesn't seem to be as much as I thought it would cover so need to look into that.

In other news DD performed in her drama group pantomime and was absolutely fabulous, she had so many positive comments from so many people. It's very bitter sweet, loved that I got to see it but so hard wondering how many more performances will I get to see. She wore a lovely balldress as cinderella and then I got all emo thinking about if I'd get to see her go to prom. Bastard cancer.
Two more lots of chemo, with the cetuximab, and then we'll have a bit more idea of what's going on and if it's working as getting rescanned etc. Everything crossed that it is doing something to stop the growth.

A big phew for Coffee and Mysillydog. Sorry you both had the additional stress

Good luck with the scan pepper. I do that too. Though once had a bit of a panic as I decided I'd better check my appointment letter before we set off, only to notice my scan was at a different hospital thankfully it was the same distance and I'd read it before we started driving...

royal good that you don't have to wear it all the time, but still annoying

chewing I hope yesterday's chemo went alright

Flippy good that you're recovering okay physically. Have you been offered any counselling? for your DH's anniversary

rocket good that the surgery went well. I hope you're not in any pain and that your recovery goes smoothly

fluffy good that you can have the cetuximab. I'm on it too. It's not too bad. The rash was quite unpleasant the first few cycles. But it's definitely calmed down. In fact sometimes I worry a bit that it's not so bad, though then it always flares up and I kick myself for wishing it back I was prescribed hydrocortisone cream and antibiotic lotion but I rarely bother with them now. I'm on continuous oral antibiotics at the moment which I think help the rash too. The weirdest side effect has been hair growth. My head hair fell out but my eyebrows have gone completely mad. All different colours, lengths, randomly falling out... Also all of my arm hairs fell out and grew back really dark (I have very pale skin!) and I got new hairs on the back of my hands and stuff. I am painting quite an attractive picture of myself

I had my blood transfusion yesterday. I feel grim today, but it's one of my worse days anyway, so hopefully I'll notice some improvement later in the week :)

I hope everyone is having a good day

Leslie hope you feel better as soon as can be.
What a relief indeed coffee!
pepper best of luck today. I know exactly what you mean about becoming blasé about all the tests and scans..that could very well help us cope!
Waving to everybody else.

to all

i have just been to see the surgeon about tomorrow, signed some paper work, pee'd in a pot, etc - and then was told no driving for 4 weeks after wards bugger

the whole drama of them finding 'something' waiting for scans/results seems ages ago!

Are you all set looking? Good luck that's a pain about the driving though. How long are you likely to be in hospital after the op?

I've just had bloods taken today to start investigating why I'm having trouble swallowing.

I noticed six years ago that when sitting up reading in bed, it was uncomfortable in my throat to bend my head forward. I went to the doctors and then was referred.

They found nodules in my throat. None were cancerous and they're quite common apparently.

Anyway about six weeks ago, I noticed I was having to work to get saliva and food down my throat. It feels like there is something stuck at the bottom of my throat.

I go back to the GP on Friday afternoon for the blood test results. It's a standard test checking for any sign of infection, liver and kidney function and I don't know what else.

I'm so scared I have throat cancer. I'm terrified I'm going to leave my 4 dcs. My mother had thyroid cancer in her 70s and my grandfather had some form of throats cancer in his 70s too.

I smoked a lot from 14-33 and I drank a lot in my youth too. I am frightened it's all caught up with me and that's it. Over. I'm 45.

Am I right to be bricking it like this? Anyone with any knowledge of trouble swallowing?

Hi wink

Sorry I don't have any experience of this, but there's a poster who might so I will send her a message just in case.

I am sure there are plenty of innocent explanations, especially if you have had these non-cancerous nodules in the past. But of course you'll worry about the worst case scenario until that's been ruled out :) we are pretty good at hand-holding here as we know what it's like to wait for test results (most people find that the waiting is the worst bit, even if they get bad news!)

I am going in for a minor investigation in the morning. It's under GA but only a very quick procedure so hopefully I will be out by afternoon. I hope everyone has a good day tomorrow

Hi Winky. I think there are lots of things that can cause this. My DH went for investigations a couple of years ago for similar symptoms- feeling like a lump in his throat. They treat it very seriously at the GP and referred him immediately for a camera down his throat so he was quite concerned. They decided it was just caused by acid reflux and stress in the end and he was given ant-acid type pills and its sorted now. Hopefully yours will turn out to be something simple too.

Hi Winky - of course it could be a number of things but you've done the right thing going to the GP .

An endoscopy would help with diagnosis .

It's so horrible waiting and fearing results .But if the news is not good and oesphageal cancer is dx then please be reassured that this is treatable . I'm afraid that google gives quite bleak statistics but this seems to be because they include a number of people dx very late .

I've been treated for oesphageal cancer ( stage 3 ) and I'm doing very well now .

Lesley - sorry your procedure comes the day after you feeling so grim . Hope it's quick and uncomplicated and you're soon back home .

Love to all posters and lurkers .

Winky, I had a 'stuck' feeling sometimes and had an endoscopy. I had a small stricture in my oesophagus and gastritis, caused by reflux. I've been fine with anti-acid meds (esomoprozale). I had the endoscopy without sedation the first time, and with the second - definitely recommend having the sedation! I hope you don't have to wait too long to find out what's going on.

Hope procedures for Leslie and Baubles went smoothly. Nice to see some good news on the thread regarding results.

Yesterday was a very strange day, feeling like DP's death was both a lifetime ago and five minutes ago. It doesn't make sense, but that's how it felt. Whilst I'm glad DS and I have got through this first year, I feel like I'm further away from DP too. Leslie, I did have some counselling, but I don't find it very helpful. It's like picking a scab again and again when I tell someone about it, and there's never a resolution or an answer. I've recently seen a psychologist, and I didn't find that helpful either. I was hoping for some practical help, but didn't get it. Maybe it's me!

I seem to have pretty much my full range of arm movement back, with some discomfort in my back and armpit - armpit is the most annoying! I have some cording, so I'm trying to keep moving to get rid of it, or at least try and prevent stiffening.

Kittens and Chewing - I hesitate to say this, because it sounds crass, but I'm happy to share what was helpful and what wasn't with paperwork, wills, insurance etc. Macmillan are definitely a good source of support and advice too.

Hope you don't mind me posting on here-I have no real idea what could be wrong with me but do fear the worse.
I have been lurking since before Xmas(when all my symptoms started)
I have been having near constant stomach pains/bloating/back ache and burping A LOT.
I have had lots of tests done already(endoscopy-second the need for sedation on that! Ultrasound,various bloods-all ok) and now being sent for a CT Scan.. And .Awaiting CA-125 blood test results and a Calprotein stool test.
For the past week or so I am constipated so this is a change in my BMs..
Yes I am worried,Having all these tests and waiting the results has been horrible-but I really don't need to tell you guys!
I think a colonoscopy will be next (and this is the one i am scared off because its like the last test and the only one left to find anything?)
I did a FOBT myself as the Doctors would not give me one(so doing the calprotein one instead i think)and it came back positive so I am even more worried.
I am 39.

charlie sorry you are having to go through all the worry of tests and waiting for results/diagnosis. It really is a stressful time particularly if you have physical symptoms to deal with as well. I have had several endoscopies (2 involving treatment) and a colonoscopy so have some idea of what you are going through. Luckily for me that whilst they did find something it was benign so I was lucky. I do hope you get some answers soon

baubles and leslie I hope your procedures went ok and you are recovering well.

flippy I'm so sorry you've had to face an anniversary in the middle of this. What a truly awful week it must be for you. On the positive, it sounds like you're making a good physical recovery from your op.

winky good luck tomorrow.

Just a quick question from me. Anyone on herceptin suffered from vertigo type symptoms? I woke up Sunday morning and wobbled my way to the bathroom and haven't felt normal since. It's worse when I'm walking, I feel a bit whoozy, and if I'm concentrating on conversations with people (I'm still going into work).

I read that dizziness is a 'common' side effect of herceptin but you should tell your Dr if it is severe or prolonged. At what point should I accept that maybe I ought to talk to my team? Obviously I could just have an ear infection!

Minty I'm on Herceptin but I have not suffered from vertigo. As far as I know you need to report any worrying symptoms that persist for more than two weeks. I had a bout of labyrinthitis just after I had dd1 and it lasted for a week or so, but I know in some people it can be protracted.

Love to everyone.