CANCER SUPPORT THREAD 65 - for anyone with cancer or waiting for cancer tests (pets welcome!)

[WhatWouldLeslieKnopeDo]

Good morning everyone,

Welcome to the new thread, and the club that nobody wants to join. Our previous thread is here.

Anyone with any type of cancer is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

If you've got a loved one with cancer then you can get support here.

Please feel free to reintroduce yourself so we don't all have to remember from the previous thread!

Hi Pandora

My service sounds a similar set up to yours but I don't think they have let me leave without the right drugs until this time when they don't seem to have given me any steroids to take prior to the next chemo and also no blood form. It was interesting that you thought you should have been given something for thrush because I wasn't but then did get it about 3 days after the docetaxel and did have to go to the GP.

But like someone else has said I really wouldn't know what drugs I needed but now assume I must need steroids and anti-sickness as a minimum I have had them for every round so far.

Fortunately haven't needed to darken A&E's door yet and hoping to get through all the chemo without needing to....but still quite a long way to go for me.

Pandora that's absolutely shocking. I have a 24/7 emergency number for the chemo unit. Luckily I haven't had any issues so far so I have no idea how good they are

How are you feeling today Leslie? Are you still in hospital?

Good call noodles !!

I’m already signed up for that, but for a different (cancer-related) charity. I’ve never done a Santa Dash before, but have a pack of massed Santa runners and I hope it’s as much fun to do as it looks!

Also, it is very much a fun run (I believe some participants even have a pub break!) attracting loads of walkers. So anyone who can walk at an average pace for an hour or so could give it a try.

I went to a LGFB workshop earlier this year - it’s a lovely organisation and I hope it gets plenty of support (in this and all its other fundraisers).

Though (harking back to posts of a few days ago) I did wonder if I’d feel a bit of a fraud - none of my treatment has altered my appearance. But it was thoroughly welcoming/friendly and it’s fine to be there just for the fuzzy benefits of experimenting and picking up some tips in a nice group. I’m not particularly ‘girly’ so it was a really enjoyable new experience for me!

Leslie I hope your bed neighbours are considerate and there aren't hordes of noisy visitors on your ward - and that you're OK of course! I know it takes a while to recover from pneumonia but hopefully the medics will get you back home pdq.

Afternoon ladies

Have tried to catch up but am probably wrong!

@WhatWouldLeslieKnopeDo hope you're continuing to improve 

1wk post first docetaxel and I seem to have gotten off rather lightly by comparison. Joint aches have finally stopped and taste buds have gone so delighted to have found pink grapefruit squash as I'm not a tea/coffee drinker. I can't seem to hold any food though. Am not being sick but every time I eat about an hour afterwards I start having a sore stomach and eventually it all just falls out. Not badly enough to phone anyone but certainly sore and uncomfortable and making me wish to be nearer home than not.....

Work still fine and we had a big posh event to attend last night which I managed. I only had 3 drinks (which I didn't finish) whilst everyone else around me was totally shit faced. I would feel smug today but I'm too tired.

DH back to work after a major annual leave period. Will do him good to not be so focused on me!

DCs all fine and having contacted who we believed to have been my biological mother, we now have someone to help fill in some blanks with the medical history side of things.

I've had a letter calling me back in to see the head oncologist but after only my second chemo which I don't understand. I'm not sure why she's asked to see me but it's not till end of Nov so can't imagine it's urgent? Last time they phoned and had me in the next day.....

Hello,

I'm new here. I've not been diagnosed with anything yet but I have symptoms that might be Inflammatory Breast Cancer. I am waiting for my referral to the breast clinic but feeling much worse now and very concerned.

I'm 30 so relatively young but the wonders of google have informed me that it's still very possible that it could IBC :(

So yeah- hi!

Hello@EmilyRosiEl sorry your here but we are all very nice. I'm older than you 42 but I was diagnosed in July.
This is the worst bit, the waiting and wondering. Once you have a plan it's actually ok!
Feel free to ask questions and I'm sure someone can help, they have done me!
@KeepCalm did they give you the injections with the Docetaxel? That's the bit I'm worried about (from a person who has acupuncture, ridiculous I know!). Fingers crossed I start Docetaxel on Tuesday.

Hi @EmilyRosiEl sorry to see you here but welcome.

I'm rather new to this gig too but if your diagnosis is what you fear these gals are the font of all knowledge.

Do step away from google, I've found it's not my friend in this shitty situation 

@ranoutofquinoaandprosecco no injections for me!

Just antisickness drip then flush then first dose then flush then cheerio 👋🏻

What injections have you heard of?

Keepcalm I have to see the oncologist every few weeks just to check if I'm having any side effects from the treatment, your appointment might just be that. I can't see it being anything urgent if you're not there for a few weeks. Although I hate it when they don't tell you why they want to see you! It's not like we worry enough already

Waves to Emily 👋 I'm 35 but I have liver/cervical/bowel cancer so probably not much use to you. Honestly the waiting is the worst bit, try and keep yourself busy if you can to pass the time

Gosh it's interesting seeing what we all get given.
I've been told I'll be having possibly 2/3 G-CSF (granulocyte-colony stimulating factor) for a couple of days after Docetaxel I think days 3/4. Their to stimulate the white blood cells.
Did they give you any painkillers for the aches as well? Sorry for all the questions I just want to get as prepared as you can be. I was ok on the EC and am apprehensive about starting the Docetaxel but it's the right thing to have.
Glad you've got a bit of normality with your work stuff and your DH back to work. My DH has been off this week and I'm beginning to snarl as he's getting under my feet! I've just sent him to the pub to watch the footy and have a couple of pints!
I'm hoping to do a few hours tomorrow of work and maybe squeeze a couple in before chemo on Tuesday then I'll go awol for a week

Thanks @purpleunicorns it's difficult not to go straight to the 'oh f*ck' panic when the letter drops through isn't it!!

@ranoutofquinoaandprosecco haven't heard of that at all! I've had a lot of information thrown my way the past few wks but not that.....

I don't know if it's because I was supposed to be FEC-T and then docetaxel and it's now changed to purely docetaxel?!? Who fecking knows?!

No painkillers. Just told to take paracetamol. I usually take neurofen plus to help with my arthritic hip but was told I can't take that the day before/on/after the chemo.

Have been chewing them like sweeties since but it didn't help. I also got my period which usually makes my pain threshold drop so maybe that hasn't helped??

I had a decent sleep for first time last night so that's helped. Will have to tell DH that I need a fancy pants hotel every night to help lol

Aha that might be it @KeepCalm god knows! Sometimes I just do as I'm told and other times I probably do their heads in as I have a ton of questions!
Oh yes, get the fancy pants hotel booked. Think my DH is getting fed up of my saying I'm worth it when I'm spending up! We've got to have something to look forward to

@ranoutofquinoaandprosecco doing what am told is a strange thing for me but I'm trying!!

Last night was a works do but as the boss/business owner it's still my pocket and we're a small business (eek) I took a room rather indulgently as the hotel is only 10 minutes from the house so the baby sitter could stay over and so I had somewhere to go if I felt crap. The tickets for the awards were bought months ago so I didn't want to not go with the staff.

Completely agree re something to look forward to. Have booked an AirBnb for after my chemo finishes with friends and can't wait!! I also got a great Itison deal to take DH away next year too. Probably a little foolish but f*ck it lol

Hi Purpleunicorns! Nice name :) thank you for welcoming me. I'm sorry to hear you've been diagnosed though. Hope you're having an ok weekend?

Thank you Ranoutofquinoa and Keepcalm :) I hope you're ok today. How are you both?

Does anyone have IBC? I might just be panicking about some benign symptoms but Namechange let me know that you are an friendly bunch even to pre-diagnosis/just-worried people so thank you!

Hi @EmilyRosiEl I'm not sure what type of breast cancer I have which probably sounds odd. I think I switched off when I was first told and to be honest I don't want to be googling so I haven't asked again! All I know is that it's stage one, large 5x5cm and hopefully slow growing.
Hopefully one of the other BC ladies will be along soon.
You won't believe it at the moment but my weekend has been very normal. It all settles down into a kind of 3 week routine with my chemo and this is a fab weekend where I feel normal, eat and drink what I feel like so Thai curry and red wine this evening and watch crap tv with my DCs! Do you have a date for your next appointment?

Hi @EmilyRosiEl I have been diagnosed with grade 3, triple negative breast cancer which is stage 4 as already spread to my lungs. Am not sure if that's any help at all as I don't know if that's IBC sorry!!

Hi Randoutofquinoa,

Thank you for reassuring me about things getting back into a routine! I'm really sorry about your diagnosis.

I haven't got my appointment letter yet as I only saw the GP on Thursday but I think I might go for a private (I don't have insurance) MRI of my bust this week because I'm not feeling well and I know with IBC it needs to be diagnosed quickly.

Hi Keepcalm, that must have been a huge shock. It sounds like your diagnosis could be IBC but it could be one of the others- I think IBC is always diagnosed at stage 3 or 4. I need to step away from google.

I am not sure how to deal with the fear at the moment. I have a very sore throat (my neck looks enlarged today), which has been going on for three weeks, painful bust and a feeling of compression in my collar area. Plus I keep seeing flashes of light- am I just panicking or does this sound like a problem? I've noticed a small rash along my back so it could be shingles but I just don't think so.xx

Emily hiiiiiiii

I’ll be back later with proper advice, but the most important thing is to remember that the referral is to rule out cancer and LOADS of the time that’s what happens. This thread is full of posts from people who had their appointment and then got good news. Can’t type more as trying to lose a pub quiz and have to turn my phone off again! But i’ll Be back later...

Hi Emily. I'm 32 and I've got invasive ductal breast cancer stage 3 with inflammatory presentation measuring upwards of 10cm. I keep being told that a mammogram is not much use in the under 40's due to our denser breast tissue. Mine was finally diagnosed by a skin punch biopsy as it had invaded the breast skin.

Hi emily sorry you find yourself here, hopefully it won't be for too long and you can wave us goodbye quickly.

I have breast cancer, not inflammatory though, I think mine is the invasive ductal type. It is aggressive & grade 3, I don't know what stage yet until they do my op, but from what I have read I am either at the top end of stage 2 or the bottom end of stage 3, it depends how many lymph nodes turn out to be affected.
Try not to panic too much, the waiting is def the worst bit. If they suspect cancer, the guidelines are to be seen within a fortnight. I did read that inflammatory is very rare, not that that helps much when you are worrying, but fingers crossed you don't have it.
When I was referred from the GP's I had a call from the breast clinic the same day as my GP appt to book me in there, so hopefully you will hear soon & can weigh up whether to wait versus going private for the MRI.
Also you have seen your GP pretty quickly, so try not to panic as if it is anything, you will get treatment very quickly, but as namechange says, many people have symptoms that could be cancer, but are not when investigated further. I hope you get your appt thru ASAP

Hi Emily, I am 42 and was diagnosed with stage 3 invasive ductal breast cancer a couple of months ago. I also thought it was IBC as my nipple was inverted but it was regular breast cancer. IBC is rare but I would recommend going private quickly for piece of mind if you can. If you’re in London there are clinics on Harley Street that can see you same day and you get seen by an expert straight away.
I didn’t have any of your other non breast symptoms- they don’t necessarily sound like breast cancer but I don’t know. Like others have said a lot of the time symptoms can be anything so try not to worry too much. Good luck

Emily

So the next two weeks is going to be rough. I wish I could change that for you but I can’t. Each day will feel like about 8! There’s no point trying not to think about it as that’s not realistic, so my suggestions are...

• plan some nice things. Actually that’s the most important bit so you can stop reading here if you like! Dinner out, film, manicure, book you’ve been looking forward to, whatever does it for you!

• decide who IRL you want to tell. Are your parents around? Do you have a partner? Some people choose not to spread the word too widely at this stage because of all the people texting for updates etc, other people want an army of support. Whatever works for you is all good. What is really important is not to feel like you shouldn’t ask for support when you don’t even know whether there’s an issue yet. You are actually at the worst point right now because your head is so full. Even if you have a diagnosis in due course, you also get answers and a plan so it’s actually a lot easier to deal with. The stage you’re at now really sucks!

• step away from google. For real! This is one of the few times when forewarned is not forearmed. When it comes to cancer the internet is SO full of information and there is no way to know what is inaccurate, what will just terrify you and what is actually useful.

• know that most people don’t get a cancer diagnosis. This thread has some people who did though, and we’re all busy juggling families, friends, work, health, box sets, friends, baking (ok I’m more of a cake eater than baker), hobbies, Mumsnet and God know what else. You won’t believe this now, but life absolutely goes on even if you’re busy having treatment.

You’ve done all the right things and so has your GP. You’re getting checked out and you can take it from there. In the meantime, your job is to look after yourself for the next 2 weeks and we are here to help/nag you into being nice to yourself.

Hi Emily, I'm a recent member of the club nobody wants to be in! I think I've known around four weeks now. I have Stage 4, Grade 2 breast cancer, which is oestrogen-positive. It has spread to my spine, mostly, and have some suspicious nodules in my lungs and adrenal glands.

It's incurable, but they will keep me as well as possible for as long as possible.

I am actually doing ok at the moment- the love I've felt come back to me from my friends and family has been really overwhelming, and I have every confidence in my medical team.

The unknown is the worst: once you know, then you can plan.