Roll up, roll up and join the lacies for CANCER SUPPORT THREAD 59 - anyone with cancer is welcome (and those awaiting test results)

[WhatWouldLeslieKnopeDo]

Hello everyone,

This is the cancer support thread, which has been running for many years under different names. Most posters have breast cancer, but various other cancers are represented too! Whatever cancer you have, feel free to join us. We also welcome those who are awaiting test results to find out whether or not they have cancer. We know how difficult the waiting can be and we are happy to hold your hand. Hopefully you won't need to join us permanently

Feel free to ask any questions. There will usually be someone who knows the answer or will know where you can find it.

Whatever you do, stay away from Google!

You can post anything you like here. We don't mind swearing or complaining or angry ranting. We aren't brave or inspirational and you don't need to be either. Nobody signed up for this, but we support each other as best we can

The previous thread is here

Yippee for a surgery date! And excellent news that it fits in with DD's college plans :)

Hello all ! Just saying hope you all have a good week. Still waiting for tests so nothing new to report !

Hello everyone.. .
How are you all?
I finished radiotherapy today...phewee!! I imagined I'd be out partying, but I'm bathed and in my jammies!! But it is v nice knowing I won't be traipsing to the hospital tomorrow...that was getting v dull. It was knackering but definitely doable and I feel I've been v lucky in the scheme of things.
Now girding my loins for tamoxifen.. .eeeek !
And wanted to say a big thank you for your amazing support.
Thinking of you all....those having treatment, waiting for results or appointments.. big hugs...xxx

freddie yippee for the end of radiotherapy! How did you find it? An evening in PJs sounds like my kind of celebration

VLCos how are you getting on?

My chemo has been postponed until next week as my neutrophils were a little low. It's a bit annoying, but at least I'll get to enjoy the nice weather more!

I hope everyone is having a good week :)

@WhatWouldLeslieKnopeDo hello hope you are having a good week :-)
My breathlessness has definitely eased a lot but I am left with some chest tenderness. I was really tensing all last week so could be that. Will keep an eye on things
Bowel problems have eased quite a bit. Have adjusted my diet a little . Will definitely still have the tests .
Am enjoying my children a lot and trying to be present in the moment .

Leslie...i just love the way you can always find the silver lining...here is hoping for no clouds either. Sorry about your neutrophils tho...it must be tough never quite knowing when you're having treatment etc

Vlcos...think the key is always to live in the moment...tough tho it can be...xx

@freddiemercury it definitely takes some effort. Pjs night sounds bliss :-)

VLCos I am glad your breathing has improved. Perhaps that contributed to the chest tenderness too. I am glad your bowel issues are better too. Being in the moment sounds like a sensible plan. I find it really helps :) and it's hard not to be in the moment with little children!

freddie thank you :) no clouds for you either, I hope. I find life much easier when I focus on the positives. They always far outweigh the negatives anyway, even in the darkest of moments. It is a bit of a pain as I feel I can't really plan stuff too much as I don't know which weeks are going to be my "good" week. Though it's much better since my op as even my "bad" days aren't anywhere near as bad. My treatment hasn't been delayed for ages so it was a bit of a surprise to be honest

is one of my favourite ever songs

Waves and warm wishes to everyone reading.
VLCos My Colonoscopy is arranged for the 24th of next Month-I have to go for a pre-assessment meeting a week before?!?! Do you?
I still get bouts of Belly ache but do believe that a lot of my symptoms were caused/made worse by my anxiety over it all and things have settled now as I am much less anxious-I am now more worried about having the test and part of me wonders if I should actually go ahead-especially as the Docs I saw prior did not think I needed to undergo a Colonoscopy.Arrrr not sure what to do.
If I do not do it I know if my stomach ache gets bad again I could easily slip into the depths of HA so it is probably for the best I do it plus I fought for this test to be done.
What are your thoughts if you do not mind me asking?-I see you are more settled but suffering anxiety in other ways now?

@charliebear78 hello !! Yeah I have to go for a pre op didn't really see it as a op but guess they must do !! If it was me I would have it done for peace of mind because if it flares up again you will have to go through the whole process again. At least this way your mind will be put at rest.
Did you ever get chest pain or breathlessness with your HA ?
I think I am suffering with that everytime some own tells me they have something I think oh yeah I have those symptoms . Crazy I know

Morning @WhatWouldLeslieKnopeDo and everyone else :-)

When I was really bad with it all(over Xmas/New Year which was a really shitty time to feel this way)I did feel chest pain and a tightness in my throat-also felt like I was watching everything going on but was not really there if that makes any sense?
I will go ahead with it.
When are yours? I thought you would have had your Scan by now? must be so frustrating.

I just saw this and I thought it might amuse you two while you're waiting for your colonoscopies...

charlie I'd definitely go ahead with it after all the effort it took to get the referral etc. You don't want to have to do that again if your symptoms return. The colonoscopy really isn't that bad :)

@WhatWouldLeslieKnopeDo hahaha

@charliebear78 yes that's exactly how I have felt with it. Horrible isn't it . Must have some effect on your body.
My CT of abdomen and pelvis is 27th June. Colonoscopy is 5th July. Feel like I have been waiting a long time. GP reassures me consultant could have done it as quick as he wanted to if concerned ! X

Leslie Not sure which one I would prefer-You are right though silly to put it off through fear of having it done!(most people say it was not that bad, and indeed one of my RL friends is having hers done tomorrow!

VLCos Good luck I know you will update so no need to ask you to lol.
It really does have such an impact on the body as well as the mind.

Hiya, after my CT and flexisig the hospital advised that I would be seen within 2 weeks I am still waiting for a letter/contact. So, I rang them up to find out the the consultants met up on Monday 12th to look over my results, a letter has been typed but not yet signed and therefore not posted. The lovely consultant's secretary read the contents of the letter to me and the bowel biopsies are all OK, but I do have some inflammation - great news, phew! However, the CT detected a adnexal cyst on my left ovary, so it's no over to the gynae team. She also said my CA 125 test in February showed level 5 (I googled and that's low, but then I wondered if it was 50?) I did have a trans vag scan 2 years ago and all was OK. Anyway, pleased the bowel is alright, just got to wait for the appointment to look at my ovary. Hope everyone is doing OK xx

Hello everyone,
Please forgive me, but I haven't really read any of your posts properly.

I had a hysterectomy seven weeks ago because of large fibroids.
Operation and recovery up to now have been unremarkable.

I had a call from my consultant last week to say that one of the fibroids was malignant.
Completely unexpected and rare apparently.

Saw oncology consultant on weds.
The plan is CT within two weeks.
If it's clear then radiotherapy for five weeks mon-fri
If it's not clear then the plan will change

Feeling numb/panicky/normal in a continuous cycle!

has or does anyone have this. ( Leiomyosarcoma)
Anyone who's had radiotherapy tell me how it went?
Thankyou

@Finewineandcake hello ! Glad the bowel issue was all OK. Sorry to hear about the ovary once they have a closer look I hope that all comes back OK to. More waiting for you but it's a good job they are being through with you !

Hi all, I've been away again but lurking a bit.
Leslie hope you are keeping busy. I find looking for the positives and little things in life that make me smile is the best way to get through it too.
Greyboot No experience of that, but someone will be along I'm sure. This part waiting for scans and plans is the hardest
finewine great news on the bowel and hope you get good news about the ovary too.
VLCos and charliebear I hope the wait for your tests isn't too stressful
freddie Yay for the end of radiotherapy!! I hope you are feeling ok, when will you start tamoxifen?

I had my lumpectomy last week and the mammogram before it showed no visible cancer. I get the biopsy results next week, but surgery went well and I'm not in much pain.
I had my PICC line out and can't wait until I can go swimming, nor can my DD!! just waiting for wounds to heal.
I've been more emotional recently as I think the enormity of what has happened in the past 6 months has hit me. I'm heading back to work in a couple of weeks too and it feels strange but good. Next stop radiotherapy, I'm hoping it will be during the summer holidays.
or for everyone out there going through this

Finewine that's excellent news about your bowel biopsies. I hope they can get to the bottom of the inflammation. And good luck with the gynae tests

Greyboot welcome, but sorry you need to be here. What a nasty shock after your op. I hope you're recovering well. Off the too of my head I don't think anyone here has that type of cancer, but maybe someone lurking has experience :) most of the posters have breast cancer and so can probably advise on radiotherapy. I've not had any (bowel cancer). Fingers firmly crossed for your CT scan I hope they can squeeze you in quickly as the waiting for the full picture and to start treatment is the worst bit for most people.

Halfbaked that's such good news :) I hope you're healing well. How long until you're allowed to swim? That'll be great. Fingers crossed for your biopsy results

I hope everyone has had a good weekend

Grey boot, I've just finished radiotherapy...honestly it was fine. I'm knackered and my skin is a bit blistered but otherwise no issues at all. To put it in context, when I say knackered, I had to stop commuting to work, but still did full days from home, around my hospital appointments. And also still went out in the evenings a couple of times a week. But i'm usually running around everywhere all the time and that had to stop....and even though i finished a few days ago now, i'm not back up to full strength.
Truly the waiting around for scans is the very worst of the whole cancer thing, once you know what you're dealing with, it does get easier. My only advice is make sure you trust your consultant and vaguely keep on top of everything yourself....i suffered admin errors but my actual medical care was amazing.

Leslie - i LOVE that song...music wise my go to song is Steve Harley Make me Smile (come up and see me)....never fails to raise my spirits, especially while prancing round the kitchen with my two songs, singing it loudly (my neighbours must love me..ahem!). i also found that watching old episodes of Cold Feet helped, and my other confession is rereading jilly coopers....at the beginning of the whole cancer thing.

Half-baked - brilliant news about no sign of cancer, and my fingers are very firmly crossed for your biopsy results

flippy - think it was you who mentioned moogoo for radiotherapy skin....i went on their website but got thoroughly confused by all the different options, which cream did you get?

Fine wine and cake, great news for the bowel results, fingers crossed for your gynae stuff now...

And everyone else I hope that all is as good as can be expected....i'm about to take my first tamoxifen....don't know why i'm so reluctant to do it, after all it is proven to help and I don't want to go through this again....odd...

xxxx

Evening all. I am finding the heat a bit too much at the moment so excuse me for not name checking everyone. Suffice to say that I hope you are all doing ok. Good luck to those awaiting results.
I have had several painful spots/pustules on my head and in my nose recently so am on antibiotics to try to reduce these. These have been the worst side effects so far so I can't really complain too much. It is six months today since I was given a prognosis of approximately six months and I am still going strong. Just awaiting the CT scan and results to determine what the next plan will be. Hopefully not too much of a roller coaster as I could do with a smoother ride at the minute.
to all

Good morning

The heat is hard work isn't it chewing I hope it cools down a little bit soon. The spots sound nasty. I hope they clear up soon. Good luck with your scan results

freddie how did your first tamoxifen go? I hope you don't get any troublesome side effects. Thats a great song and very cheering! I am a terrible dancer, but I maintain that a good boogie is pretty much the best thing for anxiety. It's pretty much impossible to worry about scan results or whatever while dancing. Elvis is a particular favourite and go me through the limbo last year while I was waiting for confirmation my cancer was back

Waving to everyone and hoping you're managing to stay cool ish

Hi all, this looks like a fab thread and is my first post on here today after reading. I've very recently 4 weeks ago) been diagnosed with breast cancer, I'm 44 with no family history so has come as a huge shock and think only just starting to come to terms with it! Consultant is great so far as are the breast nurses so feel supported by them and everyone so far but as you've all mentioned, it's only people going through the same thing that know how you're feeling so glad I found this.
So first chemo session yesterday so 7 more to go! Typically started on hottest day of the year so wasn't hugely pleasant but not as bad as I'd built it up to be. Feel ok so far but taking it easy and glad my DS is at nursery today so I can relax. Got another consultant appt on Friday as had to have another biopsy last week due to additional lump showing on MRI but apparently doesn't affect treatment, just surgery at end so taking view that it is what it is for now!
Got hair apt later this week for the short cut before it all comes out and wig fittings early next week, must say that's the hardest bit for me so far but keep reminding myself hopefully won't be forever and at least a chance to rock a new style 😀
Hope everyone doing ok in the heat, 31 here in London so inside with a fan and my underwear, let's hope no one knocks on the door!
So glad I found this, wishing everyone on here support and best wishes

Hi Joesmummy but sorry about your diagnosis

This weather is horrid for chemo, so hopefully it'll cool down a bit soon! I hope your side effects aren't too bad.

How old is your son? Is he coping OK with it all?

Good luck with your appointment on Friday. But good that the other lump doesn't seem to be a concern for your team :)