New year, new thread - cancer support thread 68 - join us if you have cancer, or are waiting for cancer-related tests

[WhatWouldLeslieKnopeDo]

Hello everyone,

Welcome to the new thread. Our previous one is here.

Anyone with any cancer is welcome, or anyone waiting for tests because they might have cancer. If you're new, just jump in wherever. Don't feel you need to catch up with previous posts. We talk a lot! Ask any questions you need to. Someone will hopefully have an answer. And feel free to post photos of cute pets too.

Whether you're new or not, it's helpful to post a little introduction on the new thread to save people trying to remember everyone's different diagnosis and treatment.

Leslie glad the new mattress isn't adding to your difficulties .

I must be the only poster who can so consistently put their foot in it ! I didn't mean to imply that star contributors like yourself were somehow making newbies feel bad ...but I see that somehow I've done exactly that .Just ignore me !

Gah! The anxiety comes in waves, doesn’t it? I’ve been in the office today and a bit of routine has been great, but I’ve now been told my follow up appointment from the scans will be Thursday or Friday. I knew it was coming but I’ve managed to ignore it for most of the day.

Toofar it's horrible when you've managed to "forget" about it and then you are suddenly reminded.

Don't worry peridito I didn't mean to be over sensitive :)

Blimey Leslie with all that you're going through you can be as sensitive as you like .Or any other feeling you fancy .

And the same goes for everyone else on here .

I'm trying to wrap up as many things as I can so my family have less to deal with.

My main concern is my £18 of Boots points and that they might go unspent

It's a weird old business.

Beginning of 2017 I wondered why my nipple was so flat, but just assumed it was another white flag of my retreating youth. After a couple of months it was significantly wonkier than the other one so I mentioned it to the doc. Her face told me everything I'd feared. I asked if anything benign could have that nipple warping effect and she just looked at me and shrugged. I think I knew from that moment, before all the scans and biopsies what it was.

Invasive ductal plus lobular ER+ diagnosis.

Some 'things' on my liver and lungs, and a lesion of some kind on my ribs - none of which have changed and which they say not to worry about. (Yeah, right.)

Mastectomy and lymph nodes (5 I think) removed, followed by monthly Zoladex, and Aromatase Inhibitors (anastrozole). Not bothered by the mastectomy at all. The operation itself was straightforward, and the recovery was nowhere near as painful as I was expecting. The sticky plaster over the drains was more bothersome than the wound/scar. Was born with no boobs, and lived a fair chunk of my life before puberty with no boobs. Breastfeeding three kids had ruined them for recreational purposes also, so I can't say I miss it!

Sending love to all facing an op, or going through chemo.

Sending love to Purple because being in hospital over Christmas and having your escape plans foiled time and time again just sucks.

Sending love to Leslie because your infinite awesomeness just humbles me daily.

Also Dulce I've PM'd you twice about the FB group but I haven't heard anything. Please let me in

@CazY777 ihad three weeks of radio. I managed to work for the first week but then it got too much and stopped. My radio hit me after each session. Fortunately my hosp is only a 15 mins drive from home so as long as I could get home and lie and do nothing for two hours, then I could just about get up and make dinner. Felt very sick for that time too. Next morning ok. Fatigue hit a bit afterwards so had about three to four weeks off work. Bear in mind I had had a lot of operations so my system was more knackered than I think it should have been. Really bad fatigue hit about five months afterwards. Was tested for everything including liver cancer but phew it was nothing. I still don't have the same stam8na I once had.

It depends on the job, the commute, how far you need to travel for radio. I think I went back to work too soon but I have a teaching job so full on when in school.

Just wanted to drop in and say hello to the lovely ladies on this thread. I was a "member" for just a few weeks after a cancer scare that turned out to be harmless. I haven't forgotten how kind and welcoming you all were, and I was so grateful to have a safe place to vent. @whatwouldleslieknopedo - you do a fantastic job in creating a friendly and kind place to be for people who are frightened and facing something horrible. I haven't forgotten how many people on MN were kind enough to answer my questions or offer reassurances last summer. I wonder if you those of you who help women in my position realise how much your efforts and valued and just what a difference you make.

Anyway, I wish you all some peace, some sleep and some laughter for 2019 and thank you for being here xx

StandBy

Love your description of Leslie “infinite awesomeness” indeed.

Xx

Came on to echo the "humbled by Leslie's infinite awesomeness" bit!

‘Infinite awesomeness’ - yes another one here who has so much to thank Leslie for...

Mrs there’s not too much I need to add to the above re Herceptin! Just that where I am (N Yorks) there is the choice of having it done in the chemo unit, or at home by a DN. I chose the chemo unit as I absolutely adore the people there, and I also get an appointment time, whereas the DNs can only tell you what day!

There is also a period of observation after the injection - I think it was two hours for my first one and then half an hour or so after subsequent jabs. The injection is fine - a brief sting, and it’s given over a few minutes, but the nurses always chat and it’s over quickly. The fluid sits under the skin and disperses slowly, so there is a funny looking lump for a few hours, and a bit of a red mark, but that’s all. I haven’t noticed any SEs from the Herceptin itself, but for most of the doses I have been either having other chemo, recovering from it, or recovering from surgery! I’ll have to keep an eye out and see if I get any dire rear this time round!

Caz I had 25 sessions of radio back in August when it was roasting hot. I worked all the way through (except for a couple of hours off for my late pm appts) I got tired but that was partly the stress of parking at Guildford
Mainly I suffered from my skin kind of sloughing off like terrible sunburn towards the end. The SEs keep accumulating for +2 weeks post treatment. However I am currently finding that chemo is affecting me more, so in my head Radio is relatively simple as it's all superficial. The team were excellent and the sessions take no time at all - it's a pain getting dressed/undressed constantly!
Make sure you drink lots of water (lots!) and use loads of cream on your skin - I used Aveeno.
The hospital gave me Medihoney and Intrasite for the 2 bad weeks xx

Thanks everyone, I think it's probably best if I leave applying for jobs for now, getting a bit ahead of myself, as I just don't know how I'm going to feel afterwards but sounds like I could be fatigued. The hospital is 40 mins drive on a good day, though I might be using the hospital transport.
DH's procedure tomorrow has been cancelled! We're hoping they'll still be able to fit it in before I have my radiotherapy, as he has to be accompanied.

KBG parking at Guildford is a nightmare and bloody expensive. I'm glad we're in the north east now, it's not always easy to park but it is cheaper!

Caz hopefully you'll be able to buy a weekly ticket which is a tiny bit cheaper!
Fingers crossed they get your DH back in before rads starts x

Ps wear a comfy loose top that is easy to whip on and off. I didn't fancy sitting around in the waiting room in my dressing gown

The set up scan is a bit longer but not too bad: lots of tracing paper and 3 tiny black ink tattoos so they can align you properly for the actual sessions.

Oh infinite Leslie I bet "weird" hardly comes close .It must be beyond surreal and frightening and heartbreaking all at once .

Hope the old sleeve gets knitted up tonight by some sleep .

I bet you can't imagine how many people on here ( never mind elsewhere) have been comforted by your thoughtful ,kind posts and your practical approach .

Thanks for the tips KBG

Thanks Whatwould I am annoyed as well, I have another bloody incurable cancer which is teetering in remission and now this l!

I can take this on but it is not unreasonable to be annoyed and completely in denial

Agree with peridito about how I bet you don't even realise how many people you inspire and comfort Leslie! I read the posts regularly before posting and read them every evening in bed when I lay next to my DD to get her to sleep so I bet there's loads of people reading who adore you and you don't even know

littlebillie that is extra bloody awful you're officially a lacie then (we call ourselves the lacies after a typo a long time ago, though I forgot to mention it in the introduction post). What type of cancer is it? There's posters with all sorts of cancers so someone might have the same/similar if you want to chat.

peridito yes to all those things. But unbelievably sometimes I completely forget. That's good in a way. But then it's a new disappointment each time I remember.

Caz how frustrating. I hope he gets a new appointment quickly.

Thank you for the kind words. I can only assume you've all heard about my £18 of Boots points and unused Caffè Nero gift card in all seriousness, it's very flattering but I've not done anything that anyone else wouldn't do. I am so glad to hear of people benefiting from this thread though. That's exactly what it is here for. As my cancer has progressed I haven't been able to work or do much of any use, so I've focused a lot of my energies here and trying to make sure posts don't go unanswered etc. I won't be able to continue that for much longer, but I know there's plenty of fantastic posters here who will keep the thread going in the future.

Lots of love to you all

Agree that's pretty shit littlebillie.

Leslienot the same but when dx I used to sometimes forget . I think it's too much to get your head round ,how could anyone fully absorb what is happening to you . I imagine that your parents will have the same brief moments of forgetfulness .

Ghastly to have to face it afresh more than once though .

Hi, I'm a lurker but just wanted to say I think you are all amazing women each with something special to add to this thread. I got diagnosed with a large benign tumour almost a year ago when I gave birth to twins. It's called a desmoid fibromatosis. I am very grateful it is not malignant but it is still growing and not responding to current treatment. It's strange as all the treatments are for cancer. Next mri tomorrow. Anyway i just wanted to pop on to say I often think of all of you.

sparkle sorry to hear that I hope they can find another treatment that sorts it out. I researched them as I have FAP, and was told I had a higher than normal risk of getting one. They are pesky little fuckers. And whilst they're technically benign, I think it's close enough that you'd "qualify" to post here if you'd like. As you say, the treatments are the same. Good luck with your MRI tomorrow

peridito I'm too tired to think of proper words, but yes. Not physically tired, just emotionally if that makes sense.

sparkle hello! My first experience of all this hospital nonsense was a benign brain tumour when I was 10. Surgery was successful, very lucky etc but I was seen in paediatric oncology for years and I could never understand why when it was benign. Actually I don’t understand now. Anyway I guess some things they treat in the same general way.

Sparkle good luck tomorrow xx