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! :)

Afternoon all.
Leslie hope chemo was not too bad.
Freddie welcome . Yes, happy to have your recommendation. No need to apologise for being a journalist - they can't all be bad!
I am having scans done tomorrow so fingers crossed.

Ok...well I really do feel silly as I'm sure you'll have heard of him...hes professor Justin stebbings and does quite experimental stuff. I've interviewed him and he was terrifyingly clever and 8ncrrdibky passionate about all things cancer..xxxxx

I've been lurking while I've been waiting for my brain CT results - and so relieved to get the all clear today. I had the full whack of symptoms including horrid headaches, flashing lights and auras, disturbed vision, ears ringing and dizziness, so maybe a tiny bit of reassurance for anyone else in the same boat.

We have an NHS Centre for Integrative Care here, so I've requested a referral. My BCN said they'd never referred a patient before, and didn't really seem to know much about it. They offer various treatments for cancer patients, including mistletoe therapy, acupuncture, etc as well as a four week holistic course. I guess there's nothing to lose...

Welcome to new people, but sorry that you're joining us. Hope everyone else is doing alright this week, I am thinking of you all

That's good news Flippy
Freddie I'll pm you

Good luck with your scans chewing. I've lost track a bit. Are you still having the chemo or has that stopped now you're seeing the other doctor?

freddie my oncologist has done some research with him I think :) my cancer is boring so I'm just following standard protocol at the moment, but I shall file him away for future reference! Nothing wrong with journalists are you famous?

Flippy what a relief but I'm sorry you had all the worry. The holistic stuff sounds intriguing.

I've recently downloaded the audiobook of Cure by Jo Marchant. It's quite interesting, though I'm making slow progress as my brain is often too fuzzy to take things in first time

Not remotely famous...write for women's magazines, and tabloids...do the odd debate on sky/this morning and once an extremely ill advised piece for daily mail. What I find odd is usually I would write about my woes/tell everyobe everything...but I feel intensely private about the cancer...think i can't stand the thought of pity...is that normal?? One of biggest reasons I'm dreading being told I need chemo. Then there can be no hiding it.... I think I'm being silly...im.not embarrassed or ashamed it's definitely the pity thing....xxx

Btw flippy I find acupuncture amazing for my anxiety/racing mind etc...xxx

You didn't hit a woman with a frozen chicken in a supermarket, did you?

Your reaction sounds normal. Well, there's no normal really. But certainly understandable. I felt the same when I was first diagnosed. It felt like I'd suddenly become the Girl with Cancer and lost my identity a bit. Pity is difficult to deal with. Nowadays I tend to preempt it with jokes or similar.

Maybe you could write about your experience privately and then you could decide in the future whether you'd like to share parts of it.

The thing is if like to write about a truly dangerous nutritionist I saw, who told me such skewed "facts" about chemo and tried to make me go to her about to be opened holistic cancer centre instead promising i would be cured in two years ad sugfesting i spent a fortune in completely nonsensical stuff...i genuinely feel she should be exposed.. .terrible to prey on vulnerable people. I do believe diet/exercise /holistic approach has it's place.but alongside conventional medicine. I do respect anyone who chooses their own path.. .but actually telling me false facts to put me off conventional v v bad. And I've researched a LOT...tho nowhere near as helpful and amazing as Amber as selfishly I've restricted myself to what I've got mainly....sorry, horribly selfish!!
The article in the daily mail would have been far more entertaining if it had been hurling frozen food...as it was a fairly humorous piece was edited to make me look like a complete arse... when i read it i thought i was a twat...my favourite comment was "she looks like les Dawson in a holey dress coming back to haunt us...truly hilarious. Mostly because i really really don't look like les Dawson..... Th.probably about the same height......!! Xxx

And sorry...just seem quite how many typos I did there and um how rambling it is...you must all slightly wonder how I make a living writing...eeek!! Um if anyone can point me in the direction of an edit/delete button do feel free....(hanging head in shame and wondering about joining sons in primary school English lessons..) xx

Suggest skipping the tedium of my posts and tuning into the far more uplifting and amusing shipping forecast....xxx

Finger crossed for your scan and a new treatment plan chewing
Flippy great news .
I'm feeling great thanks Leslie hope you and everyone else are as well as can be .

Morning all
DieDeutsche fingers crossed for good scan results.
Freddie I know what you mean about feeling awkward telling people. I still haven't discussed my illness on FB so a lot of people don't know I am ill. I will have to say something soon I guess before I go downhill.
Stila glad you are feeling great
Leslie I am still having chemo but I can understand why you are losing track - my onc seems to be doing this too . I have had to query my letter showing the next few weeks appointments as it doesn't make sense (weekly instead of 3 weekly). The chemo suite checked with onc and was told it was definitely right but I know it isn't. I was having weekly injections earlier in the year but changed to monthly tablets 2 months ago. If my onc is making a mistake with this it doesn't exactly inspire me with confidence.

Good morning. Hope everyone is OK today. Thank you for the replies. Bone scan was yesterday and CT is on Monday. Just spent the night in a very nice hotel as I was told not to have the children close enough to touch until the morning and there is no way my 2 year old would have managed that. Still all seems surreal and I feel completely lost. I haven't really told anyone much either. I don't know what to tell. Other than that I keep getting irrationally pissed off when medical staff keep saying, "It's because you're young" as a rationale. Just seems unnecessary to point it out.

DieDeutsch, I don't know if the surrealness of cancer ever goes away, it certainly hasn't for me. Waiting for scans and results is difficult, but we're here while you wait. I only told a few people at first, and then I ended up doing the FB thing. I'd bumped into an acquaintance who was whinging about how awful her life was (it really isn't!!) and then asked me how I was and I just mumbled I was fine. I felt I couldn't do that again, but also couldn't announce 'No, life is still shit and I have breast cancer' when I saw people. The FB option worked for me, I know it's not for everyone, but I was also able to say that I didn't want to hear 'stay positive' or 'I know someone who had that and they're fine' or 'eat broccoli' or any of the other bs that people can come out with!

Chewing, I have no faith in NHS admin, I double check appts all the time and keep reminding my BCN when I need to have tests or appts for the oncs or docs. I do say I'm the PITA patient, but I'd rather be a PITA than forgotten. DP was supposed to have radiotherapy at one point and it got completely missed due to an error, so mistakes definitely happen. I really believe that being the squeaky wheel works in the NHS.

Leslie/Freddie - I will report back on the holistic stuff, but who knows when I'll finally get an appointment, as it's about a 9 week waiting list apparently. I wouldn't go down the holistic route instead of conventional medicine, but I definitely think they can work together, even if it only makes me feel a bit better/more relaxed that's a good thing.

Good news Stila :) Keep on feeling great!

Freddie, your posts are making me laugh, MUCH better than the shipping forecast.

Leslie, I can't concentrate on books any more, audiobooks are great, I now have an Audible addiction. There's loads of great dramatised stuff there too.

Hope you're ok Pepper and Halfbaked - and everyone else of course.

Chemo no 6 tomorrow - halfway through! So far, so good really, hair is still hanging in and I haven't had any horrendous side effects, just a bit of everything really.

flippy you shouldn't have to be a pita to get the right treatment. I ask loads of questions and they don't like it. I am convinced I was passed to another consultant after my original one was not happy that I was seeking a second opinion.
Anyway I'm off to hospital now and hoping it all goes smoothly.

Fingers crossed Chewing. No, you shouldn't have to be a PITA, but it's the only thing that seems to work - in a nice, charming way of course! I've spoken to Breast Cancer Care this morning, and the nurse said I absolutely should have a DEXA scan. She kindly sent me the guidelines for me to wave under my onc's nose - guess what, he's one of the people who was involved in compiling them!! ARGH!

Flippy....ever since I had a broccoli binge while pregnant with DS2 and threw up spectacularly green vomit afterwards I haven't been able to face it...tho I'm assured by all that its "terribly good for cancer"....ho hum!!

Deutsche....i think I'm a tiny bit ahead if you in the long long diagnostic phase...
Had slight nightmares too...first consultant told me to strip off..then took pride in his ability to guess my bra size just by looking (I kid you Not!!)...he told me I had 2 cancerous lumps and it had spread to my lymphnides. I had to point out that they had only biopsied one lump and my lymph nodes were clear on ultra sound an no.biopsy had been done. So how could he possibly know all if this. He referred me for bone, ct scans...wgich induced panic as made me think it must have spread. They were both clear.. .
As you can imagine I lost faith and transferred my care..i can't tell you what a difference it's made...my new consultant is fantastic and I feel completely safe in her hands. I still panic but I absolutely know she has done her homework And read my notes.. she couldn't fathom why is been referred for bone and ct scans etc. The difference inntrusting your consultant and feeling they have no idea what's going on is huge. So in my rambling way if you are concerned consider a second opinion.....and a transfer...tho realise I'm lucky as live in London as there are choices...hope there are for you too
Chewing.. .hope hospital not too grizzly xxx

Thank you Freddie. It does help hearing that. I don't like the consultant at all, she is very cold and blunt. Startling similarities actually, asked my bra size and then tod me "not meaning to be rude" but that I should be wearing a much smaller size, one that I know I wouldn't fit in. Then told me last week that the MRI had shown 5.5cm of DCIS and and abnormal lymph node, but the sonographer said lymph nodes normal and couldn't see anything to suggest widespread DCIS. It's just her definiteness of worst case scenario. I had an abdominal X-ray in October checking for kidney stones. Hopefully CT will be well. This is a rubbish game with rubbish rules. And my daughter has just started with the chicken pox - pfft!

Well hospital was not too bad but I need to have MRI next.
Freddie and deutsch at your consultants. I am considering transferring to another hospital if things don't improve soon.

It's a really shitty game, I started out being fairly gung go, feeling it was all doable...think that was the initial shock. Then in huge panic mode, knocking back beta blockers and sleeping pills like Smarties (I have a very understanding GP) .that was waiting for ct/bone scan results. Now I feel in in "golden time"...the lump is out and being onco typed and I don't definitely need chemo. But already nerves are creeping in for Tuesday appointment when i will be told if they got clear margins and if all lymphnodes were clear (they tested 2/4 which seemed fine)...blah blah. And I'm braced for the slap in the face with a wet kipper...as from what I can discern cancer has a habit of doing that. But...but....but...soooo many women manage with such huge grace and come out smiling....so I'm desperately hoping I can scrabble thru it without driving myself and all around me completely bonkers....xxx

Chewing...glad hospital was ok...and good luck for mri...
Deutsche.. .bollocks to chicken pox too...aaargh...xxx

Argh to the chicken pox Deutsche have you already had it? I hope your daughter doesn't suffer too much with it

Sorry so many of you have had bad experiences with doctors etc. I've had a few hiccups, but overall my experience has been very good. I don't usually have to chase things and I trust my team completely.

chewing I hope they sort out the chemo mix up good luck with the MRI

freddie that's pretty much how I feel, but I'm trying to tone it down a bit as I was quite ranty on the last thread I can't be doing with dishonesty and psuedoscience. I'm glad you're not the frozen chicken journalist!

Flippy I hope they can squeeze you in sooner. I sometimes have an aromatherapy head massage at chemo. The woman talks complete bollocks about reiki and energy fields and all sorts. But the oils smell nice and it is very calming. Anything that relaxes you and makes you feel happier can only be a good thing really :) (assuming not actually dangerous, of course)

Stila I'm pleased to hear that :)

Chemo mix up is still ongoing Leslie
I was given an explanation of sorts which didn't add up As I am seeing onc on the day of the supposed chemo I will ask him directly what's going on. I don't know why I have had so many problems and can do without all this palaver!

Chewing I'm so sorry you're having to deal with this. I think sometimes the professionals forget that a) we've never done this before and b) we are the most important patient to us. I've amazed myself at how uncharacteristically "forward" I've been about asking questions and double-checking my understanding. I've also found it really helpful taking a friend to each appointment - she will speak up when she knows I'm hesitating (or have forgotten). I write all my questions down and go through them all with her beforehand. I know I'm very lucky to have her. I'm sure all this is granny telling you to suck eggs so apologies for that. Just want to encourage you to keep pushing and not let anyone fob you off.