Cancer support thread #72 - come in, we're here for you

[Bloodybridget]

Welcome to the new support thread for anyone who has cancer, at whatever stage of treatment, is worried about symptoms, or is waiting for tests or results.

This is the place to worry, moan, ask questions, share experiences and good and bad news, and celebrate milestones!

If you've got a loved one with cancer then your best place for support is probably on the Life-Limiting Illness board.

Our previous thread is here

Current members, please do introduce yourselves

Does anyone here have any info about crap margins?

I was meant to have a CT on Friday but it’s been cancelled because margins are less than 2mm. My team aren’t available because of weekend and now I’m doing the whole non sleeping panic thing.

I know my lymphs are fine. But why would a ct be cancelled because of margins?

I don’t know why that should be Mustard .
I am waiting to be transferred to Liverpool for ct scan and mastectomy with diep reconstruction.
My margins are less than 2mm after 2nd excision . I was told ct scan was to locate blood vessels in my abdomen ready for diep but more than that I don’t know.
Bloody hate the small hours or wakefulness !
Hope you can get to sleep and that tomorrow brings some clarity .

@Trumpton thank you! I hate the small hours beyond anything else. I’m always sensible until 3am hits.

I’m seeing my boob team on Monday. I just really don’t get the whole cancelling ct because of margins thing. What the actual fuck is wrong with my margins.

Hi everyone,
I had breast cancer at the beginning of 2018. Had a lumpectomy, mastectomy, chemo and radiotherapy and a follow up mammogram and scan and all ok.
Yesterday I had several jerks in my right arm while I was dozing on the sofa - half asleep / awake.
My daughter has these jerks as part of her epilepsy (juvenile myoclonic epilepsy). It is highly unlikely I've developed JME.
Does anyone have any experiences that are similar?

Of course my brain has decided that I now have a brain tumour :-(
I am going to my go tomorrow......
Any thoughts?

Hi fedup
Sounds like you really went through the mill in 2018. Well done for getting through it all. I think it can leave an impact though aside from the obvious surgery scars etc and can make us hyper vigilant about anything that might indicate a return of something nasty. I think you're very sensible to check things out with your GP if you're worried but I would imagine that you'd have more obvious symptoms than a twitchy arm if you had a brain tumour.
I quite often get twitchy when I'm about to fall asleep as does my DP. It's how I know that he's nodded off and is no longer watching the film he wanted us to watch when we're snuggled on the sofa. I think pre-sleep twitches are a thing and quite common. Could it be that? Or maybe something about the way you were lying?
Whatever it was, good to get reassurance from your GP and i hope you come home from that appointment feeling better.

I see Mustard and Trumpton were not sleeping last night. I was wide awake as well but resisting my phone.

Trumpton - didn't you say you had some sleeping pills? I take it they are not helping.

Mustard It's awful when you have to wait all weekend to ask something. Imagination gets out of control. I hope you got answers today.

fedup hello. End of treatment seems to signal the beginning of a lifelong fear of cancer coming back. Hopefully your GP will take you seriously and either check you out or reassure.

WTF how's the appetite? Do you find anything you can eat?

Oncology nurse pre-assessment tomorrow, DH coming with me. I have a long list of questions. Then Muga scan early Wednesday. It's a 2.5 hour round trip but I think I'll go on my own to that one.

@fedupntired one of the most difficult things I’ve found with cancer is that every twinge/symptom I have my first thought is ‘cancer’! It’s horrible.

In all likelihood it’s probably nothing, but it’s good that you’re getting checked out. Don’t let your gp fob you off!

@Skap I’ve calmed down a bit now, margins are ok, so going ahead with rads. No need for a scan apparently hence why they cancelled. Why they couldn’t have told me that on Friday I have no idea. Hope tomorrow is ok for you. What is a Muga scan if you don’t mind me asking?

Thanks folks! I've had leg twitches al my life as I drop off - it's just that it was my arm!!!!!!!
I will update tomorrow!

I had a gin last night so did not want to take a sleeping pill .
Think I will have to give up alcohol as I don’t think it’s helping my awful sleep pattern .

@MustardScreams a Muga scan measures the flow of blood pumped by the heart. It's because I have to take Heceptin which can adversely affect the heart. Apparently I will have these scans every ten weeks for about 2 years.

Hi folks, it's been a while since I've been on this thread, I think I've had a touch of 'head in the sand-itis'.

Finished my chemo 7 weeks ag then oncologist called me to tell me that the geneticist had been in touch. Mutated gene for BRCA2. He said that I had around an 85% chance of developing a new primary breast cancer. So, that and the fact that my cancer was triple negative meant that he advised that my best option was a bilateral mastectomy and removal of my ovaries. Had mastectomy three weeks ago and still feeling pretty sore if I'm honest. My skin feels like it's been burned but I've no idea if that's normal or not but I'm seeing the surgeon again in a few days so will ask him then.

Have an appointment shortly re ovary removal but I'm not in any hurry for that. I feel like I need to get better first.

Oh Ben that's hard, I'm sorry. I mean it's obviously better that the worst possibilities can be anticipated and preventive measures taken - but all that surgery! Hope your mastectomies heal well. Will your ovaries be removed with keyhole surgery?

Thanks @Bloodybridget, yes they will but I'm hoping they wait a bit before they whip them out. I've had two general anaesthetics in 4 months and neutropenic sepsis, an anapylactic reaction to chemo and three UTI's in between. So I feel pretty rung out and not up to more surgery right now if I can help it!

Good grief, that's several times more than your fair share! I'd imagine if your ovaries are ok atm you can have time to recover, not that I know anything.

Wow Ben you really have been through the mill .you poor thing .
I had two general anaesthetics in a month for excisions and am totally knocked about . Now waiting for mastectomy as Dcis has an invasive component. Very much flailing around.
My body has reacted by refusing to let me sleep and I finally caved and asked for sleeping pills .
I fell asleep at about 9 last night watching my iPad . Woke at 10.30 and took a pill ....just woke up .wow !
@MustardScreams I was expecting rads but as now showing HER2 + will have mastectomy then chemo and Herceptin .every time I get my head round what’s happening it changes !
Hair cut this morning then I think my armpit needs checking very sore still .
I took 96 year old MIL out yesterday and she bought herself a new mattress .! Hooray for gutsy old ladies who think it’s worth investing in an expensive new bed at 96 !

Have an appointment at ten!

That's good, fedup, hope your GP can reassure you and you don't need further investigations.

Trumpton. Hurray for sleeping pills and gutsy old ladies.

Ben that is way more than enough to have to cope with

Fed. I hope your appointment goes well

Estoril is lovely but the assisted boarding was the most stressful thing ever. Still we got here. Mostly lovely company except for a very old friends who announced "I always tell people with cancer not to dwell on it. You are only 1 in 3 and anyway I had it first". I was a bit but I refrained from apologising for boring her. All I had said up to that point when asked how I was was. Fine the worst is over. Not really sure what else she expected me to say.

every time I get my head round what’s happening it changes!

Exactly this @Trumpton!

Does anyone else just feel like they've lost themselves through all this? I don't recognise the person in the mirror anymore - no hair, no boobs, put on weight. I feel like I'll never look like me again.

Jesus meercat your "friend" needs a punch on the nose to learn some manners!
Trumpton love your MIL buying a mattress - and there was me wondering how much it was worth investing in a new winter coat the other day!
Ben ((())) it is strange adjusting to a new appearance; I am much thinner than I've been since I was about 13, slight fuzz on head, scar from breastbone to pubes. No strength, too tired now to even feel bored. But I do still feel like me, and within, say, four months, hope to be fitter and stronger and getting my life back. I know you have a lot to get through yet, can you look ahead to when the real BenWillbond will be back?
WTF how are you doing? Not too many loo trips, I hope. Can you eat?

@Bloodybridget. I hope so. I've tried to be very positive throughout this whole process and for the most part I've been ok, you just get through it don't you. But now I'm hopefully nearing the end of treatment it's hit me like a tonne of bricks.

Ah, that seems to be a common experience, Ben, going by other posts here. I bet it happens to me too - will hopefully finish treatment at the end of this month. Keep posting here!

Of course you are not nearly finished with treatment - completely different situation, sorry!

Feel bit of a fraud for posting here, I am not yet diagnosed. I am just so scared.

So today is my DDs 12th birthday. I should be feeling so so happy! I am!
When she went to school I had to go drs to get a lump in the back of my neck remeasured. I noticed it 6 weeks ago.

The dr has referred me to go to get scan and maybe biopsy. Appointment will be within 2 weeks.

I am so scared! I don't know what to expect. If it is bad, then what happens? So many questions I don't even know where to start! I have 3 and a half hours before my birthday girl finishes school and the brave face has to come on!

All you lovely people are so so strong! I haven't been diagnosed, it could be nothing and I am falling to pieces, Yet you all seem so so strong!

too tired to even feel bored really sums up how I've felt the last couple of weeks bridget You are spot on there. I'm not someone to tolerate lots of time on my own usually but I've felt so crap lately that it really hasn't mattered.
Anyway....feeling good today and gonna go for a mooch in the rain in a bit. I have to confess that I've stopped the oral antibiotics early which I know is a sin but they were making me feel sick as a dog and turning my fragile innards to water which can't be good. I hope any bugs have been well and truly blitzed. Seeing the oncologist tomorrow ahead of my final poisoning on Monday fingers crossed.

meercat your friend is a knob. Are you still there? I'd be struggling to keep my lip buttoned over that one.

Iputthe we're not strong....we're all wibbly wobbly underneath esoecially when waiting to find out what's what like you are currently. Hand hold for you.

Bill I hope I'm gonna be a new better me....but not quite the same...can't be after all this. And yes, I caught sight of myself in the mirror the other day with my blue scarred boob, ashen face, wibbly body and wild sparse hair and thought....yeah that's not your best look! But it will all get better wont it?! This isn't forever.