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Original poster

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

995 replies

WhatWouldLeslieKnopeDo · 06/07/2016 22:21

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.

OP posts:
cleanasawhistle · 19/08/2016 14:09

Hi everyone.

I had an appointment at the hospital this morning so they could have a look at the swelling below my collar bone (had mastectomy and node clearance last year). The BC nurse examined me first and found the swelling, she went to fetch the doctor.....he said it was a build up of fat deposits :-/

Not sure if it has put my mind at rest.

EtTuTuttiFrutti · 19/08/2016 14:45

Are they going to do any further investigation clean ?

cleanasawhistle · 19/08/2016 15:15

Hi Tutti
No it was left at that.

Hope you are on the mend.

EtTuTuttiFrutti · 19/08/2016 15:28

Well on the mend I think Clean, swellings not as bad today .

If you're not convinced/confident in the diagnosis, then I don't think that it would hurt to get a second opinion.

Original poster
WhatWouldLeslieKnopeDo · 19/08/2016 16:32

clean I'm glad they are not worried about it :)

OP posts:
mishmash1979 · 19/08/2016 21:27

EHIC definitely doesn't cover repatriation. My daughter went away with school and because of a medical condition we had to get xtra insurance that would help to fly her home if I'll and also covered any xtra expenses e.g xtra days in hotels etc.

mrsrhodgilbert · 19/08/2016 21:29

Tutti, I know what you mean about not wanting this disease to affect your daughters choice of university. We, or DH when I wasn't well enough, took DD to loads of open days but she chose the one in the nearest city. I haven't questioned her and she was genuinely keen on it before my diagnosis but I sometimes wonder what her reasoning was. She is very happy there though and it's quite nice to be able to just take her out for lunch every few weeks. Good luck with her application, I'm glad we are through all that now.

mintyneb · 20/08/2016 06:54

Morning all, thought I would try and check in today. I feel like I've been knocked for 6 and have such little energy but that's all to be expected. I had my dressings off yesterday and now have the fun task of replacing micropore tape on both wounds every day for at least the next 4 weeks. I can cope with the breast scar but I think DH will have to become a lot more familiar with my bikini line as I'm not so keen on dealing with the tummy scar!

EtTu - hello - I had to have a lymph node removed and the surgeon went through my original node scar (currently going through my 2nd diagnosis of BC) and of all my scars that's the one that's giving me the most discomfort. It looks a mess and is tender but I'm hoping when I start using bio oil like last time it will help settle it down. I hope with another day passing your scar is starting to behave itself.

I feel for those of you with older DCs as they must be so much more aware of the situation and must be torn between wanting to spread their wings but also stay close to the nest.

clean good to hear that they don't think it's anything sinister although I can understand that you will probably be feeling odd and confused at the dismissal of your concerns. I hope they didn't make you feel you were wasting their time

leslie glad you're feeling better. I remember the horrors of nausea and acid reflux- urggh!

chewing sorry to hear things aren't clear about getting results. First time round I just assumed I would get formal notification but I often ended up having to ask one of the team during my appointments which would have them clicking through my file notes on the pc to find out! This time round I've been proactive and asked when/how I'll be finding out so I'm sure it wouldn't do you any harm to ask the team

mrs - great care by the NHS! It's amazing what alternative diagnoses we are all prepared to take on board in preference to the 'C' related ones. Hope you get your results as planned and that they can offer you some help

I know there are loads of you I've left off, will try and catch up more over the weekend

Original poster
WhatWouldLeslieKnopeDo · 20/08/2016 16:11

minty lovely to hear from you. Good that you've had the dressings removed. Hopefully that means you are healing up well? Not surprised you're exhausted though. Keep resting as much as possible you've been through quite an ordeal. Don't envy you with the micropore! Flowers

Waving to everyone else.

District nurse came to remove my pump but it wasn't empty enough so she's coming back later. I'm a bit annoyed as a few weeks ago I had a different nurse who told me it would never fully empty and that she would just take away with this amount in. I'm sure it wouldn't make much difference, but I might as well get every last drop of it Confused

OP posts:
mintyneb · 20/08/2016 20:19

In for a penny, in for a pound eh Leslie?!

OMG, I've just done my first micropore change..... thought I was peeling my skin off at one point. Hideous, hideous experience thank god for DH and DD helping me out. 1 day down, 27 to go :-(

chewingawasp · 20/08/2016 21:17

Hi Minty Flowers for bravery with micropore. Hope you feel more chipper soon.
I asked if I could call for my test results but was told it would be better for the onc to go through these with me. I can understand that but it's another 3 week wait.

Original poster
WhatWouldLeslieKnopeDo · 20/08/2016 23:21

minty micropore is vicious stuff Sad my skin is still a bit funny from having to dress my port wound every day with micropore a few months ago. It got little open sores in some places, but thankfully they healed up quickly with some Germolene. Sorry I don't mean that to be gloomy, just a warning to keep an eye and get some advice if yours goes a similar way. I've never had problems with dressings or anything before so I don't think it was an allergy, especially as I've used micropore elsewhere and not had problems. But I think the constant tugging is quite tough on the skin, especially if it's a delicate area anyway.

The nurse who removed my pump today used one of those alcohol sanitising wipe thingies to moisten the skin as she was removing the dressing, which helped with it tugging my skin. Might that help a bit with tape removal? Some of the hospital nurses used to use the alcohol hand gel for the same reason.

chewing is your onc not available any sooner? It's such a long wait after you've already been waiting ages. Do you have a specialist nurse? I no longer trust mine much, and certainly would not want to discuss results with her, but they can be useful for chasing up appointments. And if yours is better than mine they might be able to go through results with you sooner than onc, or perhaps at least give you a quick overview :)

I've had my pump removed so I'm looking forward to a night of being able to wave my arms about with gay abandon without any risk of strangulation! Grin I hope everyone sleeps well Star

OP posts:
chewingawasp · 20/08/2016 23:52

Glad the pump has gone Leslie. Hope you sleep well now that you are not at risk of strangulation!
My onc appointments have been arranged every 3 weeks to tie in with my chemo. I do have a BCN that I could contact so I might give her a call. I wouldn't expect her to tell me any bad news though so perhaps it's best I don't ask Confused. It has been a long time though. First went to my gp in May and still don't know if this is primary or secondary. My fault for being a bit of a rare case I guess Grin

SleepyForest · 21/08/2016 02:27

I have a nasty chest infection which means I could die tonight. Have mega antibiotics. Stupid chemo. Hope I make it to the morning.

dinster · 21/08/2016 02:37

Thinking of you very much, sleepy and hoping the antibiotics start doing their stuff ASAP. Hope you're as comfy as poss for the mo - and not too long til morning now.

royalmama · 21/08/2016 06:32

Thoughts with you sleepy! Hope your night was restful and you wake up feeling better.
Waving to everybody else.
Feeling tense as my scan date approaches!

mintyneb · 21/08/2016 07:24

Sleepy, hope you got some sleep last night and are being well looked after. I have everything crossed that the meds start to do their job quickly and you turn the corner

TeamGBsometimes · 21/08/2016 08:34

Sleepy I hope you had a good night and you are comfortable. I guess you are in hospital at the moment and I know it's hard to get rest when you are being observed and machines are bleeping.

mrsrhodgilbert · 21/08/2016 09:00

Sleepy, how scary for you, I hope you are feeling a bit better this morning.

chewingawasp · 21/08/2016 09:18

Thinking of you Sleepy. Hope meds are doing the trick.

Original poster
WhatWouldLeslieKnopeDo · 21/08/2016 10:24

Oh Sleepy I really hope the antibiotics have done their job overnight. Fucking cancer and fucking chemo and fucking chest infection Angry you must be terrified. I hope you are getting the best possible care and plenty of pain relief if needed. Sending you lots of love and good wishes and hoping for a speedy recovery Flowers

chewing I wonder if your BCN could arrange an earlier appointment with your onc? It seems a bit unfair to keep you waiting just because that's when your routine appointment happens to be. Whatever's going on you'll feel a bit better once you have a definite answer Flowers

Sending gentle hugs to all who need them, and hoping that today is a better day for all Star

OP posts:
mumto2andnomore · 21/08/2016 12:29

Oh sleepy :( sending you lots of love and hope that you made it through the night and feel a little better today. Words are inadequate but thinking of you lots xx

Minty good to hear from you hope you continue to recover and feel stronger

Love to everyone xx

royalmama · 21/08/2016 14:42

Still thinking of you sleepy and sending you lots and lots of positive vibes.hope all is better today.

Original poster
WhatWouldLeslieKnopeDo · 21/08/2016 14:50

Just checking in for any news Sleepy and to send my love. As mum says, words are inadequate. Please don't feel any need to post until you're ready . Save your strength. But I really hope that you are on the mend Flowers

OP posts:
Mouseinahole · 21/08/2016 16:04

Just popping in to send love and positive vibes to Sleepy and to anyone else who is struggling. Next month I'll be 10 years from diagnosis with triple negative .