The Lacies are back for cancer support thread 56 - all welcome!

[WhatWouldLeslieKnopeDo]

Hello again, and welcome to our 56th thread. Some of us have been here ages and others have just joined. I hope you've all made it safely over to the new thread.

An extra special welcome to anyone who is lurking and feeling a bit shy. We are all quite friendly and we definitely don't bite, so please do say hello if you'd like to.

All are welcome here. We started off as a breast cancer support thread many years back, but all cancer types are welcome and at any point in the "journey", even if you haven't yet been diagnosed. We have all had different experiences but there's almost certainly someone here who will understand how you are feeling.

Our previous thread is here.

I have started the new thread a little early, and I will explain why in a moment.

Oh chewing what a bother. They must have soething they can give you!

No suggestion of anything to bring the bloods up. Their diary is very busy so if Monday's no good I have to do it the week after. I'll do the blood test as late as possible tomorrow in the hope it will be enough. It is annoying as I spent over £20 on transport today to get there.

Aaargh chewing that's so frustrating for you! Sorry things are not going smoothly for you

Thanks Missy. It's par for the course with me unfortunately.

Argh how frustrating chewing can you not have bloods done first thing on Monday? Is it an urgent one? My hospital gets the results within a couple of hours, even quicker in A&E, so it's possible to rush them.

Tutti good luck today

I've had to postpone my scan as I'm not well. Grr. It's just an issue from my surgery so I know what medicine I need, just trying to get hold of someone to find out the best way to get it. I wish they'd just give me my own prescription pad! I'm really uncomfortable and also want to crack on with treatment so I will be ready for next week's chemo

minty sounds like they're keeping you busy! Though glad you've got dates organised. I love my port :)

Outlaws sorry it's confirmed, but understand the relief. I think not knowing is usually worse than knowing something bad, mainly because your mind can go anywhere

Exit how are you?

I don't think we will hear from Sleepy again, though I feel awful saying that. She's been poorly for a very long time. I had a message from her a while back which felt very much like a goodbye. I hope that she has had some more time with her family and that she is peaceful and comfortable

Re. secondaries: generally once cancer has spread from the original site it is incurable and so they can be almost certain it will return even if removed. The lines are a bit blurred now as some types of cancer can still be "cured" even if it has spread a bit (e.g. breast or bowel cancer with liver mets). But generally not. Thankfully treatments are progressing rapidly and so these cancers can often be managed long term.

I'm fine thank you.

Well, been feeling very tired lately, and my back fat is still increasing. I have very bad arthritis in one of my ankles so I struggle to walk, which tends to focus my mind away from other stuff.

You are lovely to keep this group going the way you do.

leslie so sorry your are not feeling well. I do hope you manage to get your meds ASAP and are good to go with the chemo and the scan soon. You really are the heart and soul of this group. Bless you
my heart goes out to sleepy and her family. I guess you said it all leslie as concerns her...You spelt it out. i keep avoiding the thought as I wish this weren't the case..that she would show up and post and tell us all is good..at this point all I wish her is to be in peace and surrounded by those she loves most.
Tutti wishing you all the luck there is.
exit so sorry you are suffering with fatigue.

Hi Leslie sorry to hear that you're not well. I hope you can get everything sorted and get to have your chemo. I can't get a blood test locally on a Monday but could go to the hospital im having chemo at. That would mean spending the whole day there though.
Tutti hope scan went ok
Exit I know how you feel with the tiredness I've also put on weight which is frustrating as a former Miss Slinky
for Sleepy

Sorry, I didn't mean to be so blunt I do hope there will be good news. But Sleepy was quite realistic about her situation, so I didn't want anyone to be too hopeful. All we can do is keep her and her family in our thoughts

chewing that's frustrating. I was thinking the extra time would give your levels a chance to bounce back. But obviously it's more complicated if you have a long journey. Is it your neutrophils that are low? If so, it might be worth asking about the injections for next time. Others have had a lot of luck with them.

royal how are you feeling today? I hope your sinuses are improving

Exit sorry to hear about the fatigue and arthritis. Also about the back fat. It's all so glamorous isn't it!

I hope everyone has a good evening

I have no idea what it is that's too low Something to do with infection risk I think. I must get more clued up about things.

Chewing,sounds like your white blood cell count. I know for a fact there are injections to boost them. Whether or not they would prescribe them for you is another matter!
Leslie, thank you for asking. I am pretty much back to the "normal" state!
I just read this and wanted to share as it is quite relevant and deep:
www.upworthy.com/8-simple-words-to-say-when-when-someone-you-love-is-grieving?c=ufb7

Glad you're feeling better royal
I like that article - very thought provoking. You do hear a lot of the same platitudes that mean nothing. It is often hard to know what to say at these times though

Hello, I've not posted here before but asked about taking a friend a few weeks ago.
I got my results today - and I'm glad I took a friend!
I have DCIS. It was described as pre-cancerous - but then the word cancer was used a hell of a lot over the following half hour. Apparently I'm lucky to have big boobs as the lumpectomy can be done and it may not be noticeable?
I think I'm feeling a bit shell shocked. I know it could have been a worse diagnosis - but I don't really think I believed it could be me. Naive I know but I'm 'only' 42 !

Hi rocket, I'm sorry to hear you've had a positive diagnosis but I understand dcis is one of the 'better' breast cancers to have. Still a horrible shock though. Will you just need surgery? I had a lumpectomy 2 years ago and my scar is now very faint and I just have a slight indentation where the tumour was removed so what they said is very possible.

None of us can believe we have cancer either, it happens to other people doesn't it? But you'll be fine and the surgery is very manageable. I'm 52 and I think one of the eldest here so you're amongst many young women, sadly. If you have any questions just ask, there are quite a few new people here at the moment so lots of learning going on. Hope you manage some sleep tonight.

Oi. I'm 57.

Sheesh that sounds old.

Welcome rocket. Definitely normal to think I'm too young, this happens to someone else. DCIS means you've caught it early which is good. I can barely see the scar from my lumpectomy and they boob looks very similar to the other one

It is sad we will never really know about sleepy though I suspect that Leslie is right :(

Love to all

Hi rocket
Yes DCIS is a better one to have but of course none of us ever want to hear the word cancer. Hopefully you can just have a lumpectomy and be done with it. Are they arranging any other tests? I felt far too young and I'm 48. I think we all used to think of cancer as something that happens to old people, but I hear of so many younger people now especially with breast cancer. Hope you aren't too anxious or stressed, it's a horrible shock I know.

I was 41, Life begins at 40 ? I think not !
Lots younger here too sadly

Morning all.
Rocket sorry to hear your diagnosis. I understand that DCIS is indeed one of the better types to have although it is a shock to hear that you have any type Hope your lumpectomy goes well.
I lost loads of weight and was the fittest I've ever been as my 50th was approaching - I wanted to look after my body a bit better. Then I hit 50 and got the hand grenade of diagnosis thrown at me
My plan today is to have another blood test later. It will be my 4th this week and must be an armful by now I will then call the hospital first thing Monday to see if bloods are high enough for chemo. If not I'll ask whether it's worth having another test that morning as chemo is not until the afternoon. What a palaver!
Hope you all have a good day.

Chewing. You're really going through the mill. I hope that you can get the go ahead. It's not just the time, it's the money and all that emotional energy on top.
Sorry to see you here Rocket. I'm exactly a month post lumpectomy surgery. I've healed and the scar is fading rapidly. At this stage I can't see any cosmetic difference between the two breasts. Straight after the op, the operated one was definitely "higher" but I think it was having a bit of a shock reaction, and it's as saggy as usual now and I can now tuck it back in my socks.
Scan went fine yesterday, but after the driving and waiting, I was just so tired I went straight to bed (at 5pm) !!!!! I think I'm officially over the needle phobia .
I paid £10 and they burnt the results to disc for me. I'm not going to look until I've had a consultant's diagnosis, but DD wanted a copy (I've bred a wee ghoul).

So sorry you didn't get the scan as well Leslie. There was a young woman in the department yesterday also with a cancer diagnosis, who was robustly pinning one of the radiographer's down about results, dates etc. Whoever she was, a few lessons were learnt about asking relevant questions and getting answers before leaving the department. Obviously an old hand at this cancer lark. I wondered if I'd spotted you, sadly not. I hope you got your medication sorted and can get the scan asap.

I'm 53 and completed the menopause very efficiently; 1 year and 8 months start to finish [grin . I did have a 5 month period however. and for the first 6 months I was dripping in so much sweat, I was either in the shower two or three times a night or stripping the bed.
I took Oil of Evening Primrose and Black Cohosh and they did seem to help.

Lacies. Report update on Emu oil. I think it actually does work. My ANC arm hasn't been great and I've had nerve pain down into my thumb and first finger. It's certainly easing it of compared to just massaging (no oil) or the dead sea moisturizer. It's also recommended for arthritis, but I haven't tried it on my arthritic joints yet.
Might be worth a shot.
Amazon Emu Oil

We're off to Manchester Open Day and have to 'phone school so they can put it on her UCAS form today. Talk about just in time.... no pressure of course.

Hope you all have a good day.

Hiya tutti
Glad scan went well but I didn't know you could get a copy burnt to disc . I would have been interested to see my top to toe pictures. at tucking boobs into socks. I will make a mental note about Emu oil as it might help my occasional aches and pains. Have a good day at Manchester.

Hi Rocket
It's good that they have only found DCIS. DCIS can cover very large areas, particularly if it is palpable. I think most cases of DCIS are actually tiny areas picked up by screening mammography and those tend to have no lump.

Doctors tend to take all forms of breast cancer very seriously, particularly in younger women. After the lumpectomy they will examine the tissue carefully to check they got clear margins and for areas of invasive cancer that may have been missed by the core biopsies. They will probably also do a sentinel lymph node biopsy. That should give you the reassurance that there is nothing left and no spread

Hi , thanks for support all. I have quite a noticeable lump under the skin behind the nipple areas. About the size of grape/strawberry/ lump of fudge?! I can feel it but you can't see it.
Trying to get switched over into private route as I get that through work. I don't really know the pros / cons of it - but thinking I will get it all sorted a bit quicker.

Hi rocket. Some have had private care but most have stuck with the NHS. I could have gone private through DH work but everything kicked in so quickly with the NHS that I stuck with it. From diagnosis to surgery was 10 days, six weeks off for recovery then radiotherapy. That was it. Now on tamoxifen. I have regular check ups and access to three BC nurses at the end of the phone anytime. Whenever anything happens to me a multi disciplinary team discuss my treatment. That's the bit that keeps me in the NHS at the moment. They actually sit around a table all together and agree treatment.

We did inform BUPA and I had/have access to their cancer team and a nurse did call me a few times at the beginning. I'm happy with my treatment so far split between local district hospital and huge cancer centre in nearest city. Surgery was done locally as a day case. I guess a lot depends on your local hospital and its reputation.

I've just used our BUPA cover today to have physio on my shoulder as I could be seen immediately and the private hospital is ten minutes walk from home.

When it comes to cancer there aren't really many advantages to going private except perhaps a bit more convenient in terms of agreeing appointment times etc.. as mrsrhod says the NHS has the advantage of the MDT which doesn't really exist in private hospitals. The one positive I could see would be the breast care nurse in the private hospital would have less workload and be able to give you more attention. I was diagnosed at a private hospital but transferred to NHS for my treatment as I didn't have insurance. The BCN at the private hospital was far more attentive and sympathetic than my NHS one, that maybe just a personality thing but their workloads are totally different.