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Cancer Support Thread #71 - here to help if you’re dealing with cancer in any shape or form, come in and say hello.

982 replies

Brassica · 13/06/2019 20:05

Hi again everyone and welcome to the 71st new thread for cancer support.

All those who are currently being treated, have been treated in the past, have worries and concerns and/or are having tests are very welcome to pull up a chair and chat, vent, rant, pour hearts out, share milestones and anything else! We are a very friendly and all-too experienced bunch on here and there are no questions too small or silly to ask.

Our previous thread is here .

Anyone with any type of cancer (female or male) is welcome. And we will hold your hand if you're waiting to find out whether or not you have cancer at all.

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

Please can I invite current members to reintroduce yourselves below for latest situations and stories so far.

OP posts:
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7
orangesun35 · 05/08/2019 15:04

This reply has been deleted

Message deleted by MNHQ as it was posted in the wrong place.

Brassica · 05/08/2019 15:47

Think you might be on the wrong thread orangesun. Speaking personally, I’m a fan of medical science rather than psychics.

Hi again everyone, I’m back from the family visits and very glad to be home, with our lovely big bed and decent shower! Something about these relatives means they’re really averse to providing decent washing facilities and I always have to balance washbags on the toilet cistern or the floor - grrr. —Can you tell I have high standards for guest facilities?— Grin

Glad to hear your chemo is going ahead today WTF. The cold cap didn’t work for me and I gave up after two goes but I did find it was massively more bearable if I put on noise cancelling headphones and listened to something relaxing/beautiful. Bit late to tell you that for today but maybe it’s worth trying next time if you keep going. I have been wearing dark nail varnish since the start of chemo and so far it does seem to be working well. I’m halfway through the taxol protocol which I believe is where nail loss/damage is more likely and they are holding up well apart from a bit of flaking near the tips. To be honest the nail varnish 24/7 could be taking a toll as much as the chemo does and I will be quite glad to give it a break once I’m out the other side as it’s a faff and always seems to chip irritatingly quickly.

I’m pleased to hear the op went well Snows. How’s recovery? Good luck for your pathology results tomorrow. I’m facing a lumpectomy rather than mx and am slightly in awe of how ladies seem to be relaxed about a mx or even dmx. It would take me quite a mental adjustment, and I’m not even buxom. Were you having a reconstruction as well?

Miles how are you doing? Is there any update since Friday? Hope all is well Flowers.

redspook you’re doing so well to be halfway through chemorads and I can only imagine how unpleasant it all is. I hear you on the taste buds thing. Before all this I don’t think I’d appreciated how much it matters being able to taste and savour food. Quality of life is definitely diminished when everything tastes horrible/cardboardy. Chocolate is still a bit off its best for me as it is for meercat!

Welcome f&l and I really hope the soreness from the tonsillectomy fades quickly. My cousin had the same earlier this year (diagnosed just before my breast cancer) and said the after pain from the op was really unpleasant. He has finished chemo and rads now and lost a lot of weight (added complication of Crohn’s) and it is requiring a lot of rest to build him up again. I hope you have good support.

gib, is it definitely saying that 10 lymph nodes were affected, or that they removed 10? If you are still concerned, can you contact your nurse/surgeon to seek some reassurance? It sounds as if you have written results rather than having them explained in person.

skap are you managing to get more restful sleep yet? I think you said you’re expecting the treatment plan to be agreed this week so I hope that comes through quickly and gives you something solid to latch onto.

Hello to anyone I’ve not mentioned. I wonder how some of our ladies are getting on that we haven’t heard from for a little while...
@Dulcedelecherocks
@Tahitiitsamagicalplace
@maysong
@mrsed1987
@wrennatsworthy
@BenWillbondsPants
@Diaryofalways87
@NotSuchASmugMarriedNow1
@Notcool1984
@porolli
@iVampire

And anyone else I’ve missed of course Glitterball

OP posts:
meercat23 · 05/08/2019 16:45

Brassica Is the dark nail polish to protect or does it just hide? I have read about people using it before but not really clear why. I haven't had too many problems with my nails. Just a couple of finger nails that feel a bit bruised but otherwise they are OK.

Brassica · 05/08/2019 17:07

Supposedly nails are adversely affected by UV light when on chemo, which leads to weakening, brittleness, ridges, even nails lifting off the nail bed. Dark polish is to stop the UV penetrating them.

OP posts:
meercat23 · 05/08/2019 17:41

Ah! Thanks Brassica I do have some very odd looking ridges but no lifting or serious damage. They would have looked much worse if I had tried to paint them myself though. I never manage to do that without getting the polish all down the sides of every nail.

Minxmumma · 05/08/2019 18:26

Evening Everyone.

Well it's been a turbulent weekend. Thursday evening I got an email from my BC nurse saying results are in your surgeon Miss X wants to see you asap. We are aware you are away from late morning so just turn up to clinic as early as you can and she'll see you then.

Great nights sleep ^not!.
Rock up to clinic for 8am, seen first even though I have no appointment - all a bit weird!
Results show precancerous cells in a duct behind my scar tissue. Mastectomy in two weeks, hopefully no spread anywhere else so might escape chemo this time.

Left the hospital, walked round the corner, packed the group trailer and took 21 teenagers camping for the weekend. Needless to say I haven't had time to process anything at all.

Has anyone any previous experience? Any advice for recovery.
Always did hate the express train of appointments

Notcool1984 · 05/08/2019 19:33

Hi sorry for delay. My neck lump was a lymph node they are going to monitor and rescan in a month. Thinking of everyone on this forum x

redspook · 05/08/2019 21:21

That all sounds very rushed minx, I'm not surprised you haven't been able to get your head round it yet. Hope that the surgery will sort it and that you can avoid further chemo.
That sounds like a positive result notcool, fingers crossed that the rescan confirms that all will be ok.

gib1973 · 05/08/2019 21:31

@Brassica 19 nodes were removed and 10 were affected. The surgeon gave me that information but didn't really explain them. I have asked the BCN nurse to ring me tomorrow to explain the results. I haven't done any stupid internet searches today. Just taking that one day at a time

iVampire · 05/08/2019 22:24

You call and I appear!!

I’m fine, and have been catching up with everything on the thread

I was feeling rather pissed off today because u still haven’t had the letter which confirms discontinuation of surveillance scans for (benign, incidental finding) liver cyst, so I felt I had to mention it when buying travel insurance.

Reading the thread has given me back a sense of proportion - at least I am pretty readily insurable, and am medically cleared for all activities,

I continue on 3 monthly monitoring, and no-one sounds remotely worried about me.

(Yes, I’m still running)

And I had noticed we hadn’t heard from dulche recently, and am hoping she’s OK

Ben has been posting on TQ’s thread (now on part 3)

Best wishes and positive vibes for a good week to everyone!

WTF99 · 06/08/2019 01:04

Minx it sounds as if you have DCIS in the duct behind your scar tissue, which are abnormal cells that have not yet developed the ability to become invasive ie to spread. As such they are very treatable, usually through surgery only, although it's likely that they will check for spread by sampling your lymph nodes, and a definitive answer will be confirmed by looking at whatever tissue they remove , but it all does sound very good news.
I had DCIS, only widesoread and eventually in both breasts, resulting in 2 mastectomies, separated by a year.
Unfortunately I then went on to develop a cancerous lump in whatever tiny bit of breast tissue was left after my right mx, and it's for this reason I'm now having chemo. I think ive been very unlucky though as the chances of this happening are very small, and it doesn't sound as if you are on anything like this scenario.
I hope it all goes well for you with minimal intervention.

I'm home now and relaxing, though not sleeping, after chemo 4. It was ok though I felt sicky throughout, and my hat if doom started leaking as the chemo drug was half done, so had to be warmed up so they could take it off and swap it! So I had to go through the vile 1st 15 mins twice! And it won t have worked so efficiently as they had to take it remove it........I already have bald patches over the top of my head but a reasonable covering elsewhere.
Just waiting to see what delightful set of side effects I get this time....hope they bugger off quickly!

Sorry not to name check more , but I do read avidly what everyone is up to and really appreciate thought, advice and good wishes. I do try to chip in where I can.

Have a good rest everyone, and a good day snows as it's not night time where you are is it?!

SnowsInWater · 06/08/2019 07:06

No WTF daytime here and I am having a total freak out which is very unlike me. I thought the only people who would "get it" are the people on this thread but I know it is sparrow fart in the UK. My surgeon has been fab and when I last saw him the day before I was discharged from hospital he casually said that the preliminary pathology results would be available today and he would call me, I assumed I would have to wait until I saw him on Friday so was pleased. Well, it is now 4pm and no news. My breast care nurse called to check in on me this morning and was surprised he hadn't called. Because he has been so upbeat I was really expecting "all good", now of course my mind is racing and I am thinking the worst, especially as Inflammatory Breast cancer is so aggressive. DH has been a star so I really don't want to break down and howl and I know that realistically there are lots of reasons why the call hasn't come, but I'm feeling very rational right now!!!!!! Sorry for the selfish rant 😐

SnowsInWater · 06/08/2019 07:06

No WTF daytime here and I am having a total freak out which is very unlike me. I thought the only people who would "get it" are the people on this thread but I know it is sparrow fart in the UK. My surgeon has been fab and when I last saw him the day before I was discharged from hospital he casually said that the preliminary pathology results would be available today and he would call me, I assumed I would have to wait until I saw him on Friday so was pleased. Well, it is now 4pm and no news. My breast care nurse called to check in on me this morning and was surprised he hadn't called. Because he has been so upbeat I was really expecting "all good", now of course my mind is racing and I am thinking the worst, especially as Inflammatory Breast cancer is so aggressive. DH has been a star so I really don't want to break down and howl and I know that realistically there are lots of reasons why the call hasn't come, but I'm feeling very rational right now!!!!!! Sorry for the selfish rant 😐

SnowsInWater · 06/08/2019 07:06

No WTF daytime here and I am having a total freak out which is very unlike me. I thought the only people who would "get it" are the people on this thread but I know it is sparrow fart in the UK. My surgeon has been fab and when I last saw him the day before I was discharged from hospital he casually said that the preliminary pathology results would be available today and he would call me, I assumed I would have to wait until I saw him on Friday so was pleased. Well, it is now 4pm and no news. My breast care nurse called to check in on me this morning and was surprised he hadn't called. Because he has been so upbeat I was really expecting "all good", now of course my mind is racing and I am thinking the worst, especially as Inflammatory Breast cancer is so aggressive. DH has been a star so I really don't want to break down and howl and I know that realistically there are lots of reasons why the call hasn't come, but I'm feeling very rational right now!!!!!! Sorry for the selfish rant 😐

SnowsInWater · 06/08/2019 07:08

And of course it has posted multiple times - sorry!

WTF99 · 06/08/2019 08:11

Dunno if this is gonna post at all.....or maybe 3 times!
snows i can see your reply to me in my 'I'm on' list but not on the actual thread. I think mumsnet is broken! There are issues on other threads too 😐

WTF99 · 06/08/2019 08:12

And now I can see it...yay!
Will read it now xx

meercat23 · 06/08/2019 08:13

No need to be sorry Snows the MN site has been going crazy for the past 24 hours. Even if you had posted three times that would be quite understandable while you wait for that phonecall. I hope that by now it has come through and that the news is good.

WTF. I have never heard of the caps leaking. Having to go through the start up all over again must have been really unpleasant. Well done you for sticking with it. My worst session with the cap was my second session of chemo when they used the Port for the first time. I think it hadn't been stitched properly and when they tried to use it the wound popped open and they had to call the doctor to come and restitch it. Not nice but no big problem except that they had already put the cap on me but not switched it on. I ended up with the cap on for an hour before even the dreaded 15 mins started. I was so sick for the rest of the day even with the sickness meds they gave me.

I overdid it a bit yesterday and am paying for it now with fatigue and very achey legs. I didn't do anything very strenuous, just some food shopping and cleaning the kitchen but it wiped me out. Now that the chemo and rads are over I just want it all to go back to normal. They did warn me that it can take up to six weeks for the rads to leave your body. Quieter day today I think.

meercat23 · 06/08/2019 08:13

No need to be sorry Snows the MN site has been going crazy for the past 24 hours. Even if you had posted three times that would be quite understandable while you wait for that phonecall. I hope that by now it has come through and that the news is good.

WTF. I have never heard of the caps leaking. Having to go through the start up all over again must have been really unpleasant. Well done you for sticking with it. My worst session with the cap was my second session of chemo when they used the Port for the first time. I think it hadn't been stitched properly and when they tried to use it the wound popped open and they had to call the doctor to come and restitch it. Not nice but no big problem except that they had already put the cap on me but not switched it on. I ended up with the cap on for an hour before even the dreaded 15 mins started. I was so sick for the rest of the day even with the sickness meds they gave me.

I overdid it a bit yesterday and am paying for it now with fatigue and very achey legs. I didn't do anything very strenuous, just some food shopping and cleaning the kitchen but it wiped me out. Now that the chemo and rads are over I just want it all to go back to normal. They did warn me that it can take up to six weeks for the rads to leave your body. Quieter day today I think.

Brassica · 06/08/2019 08:14

Try refreshing the thread - I was able to see snow’s post when I did.

Sorry to hear you’re on tenterhooks snow, not helpful when you need the reassurance. I hope the call comes through ASAP so you can relax and obv that it is positive! It’s that rollercoaster again...

OP posts:
WTF99 · 06/08/2019 08:16

And having read it.....oh dear...poor you...the worry and uncertainty it truly horrible.
I expect he's just caught up with stuff, but I would totally be feeling like you are.
Can you call the BCN and get her to prod him, or give you an indication herself of the outcome?
Feeling for you xx

WTF99 · 06/08/2019 08:28

meercat that sounds horrible! I really hope I don't get another session like yesterday. They are in two minds about whether I should do it at all as I am thin on top now ( I put that down to it not being properly applied by the faffy student nurse on my first session when i knew about as little as she did....but I'm trying not to be bitter AngryGrin) and tbe cold can burn bare skin, but I was keen to have a go. Scalp in tact this morning I'm plea Sed to say......and I don't feel sick! Did I already say that? I'm just so pleased, though I'm sure illl be moaning later in the week lol.
Take it easy today. Im properly signed off work ifor ages now and sounds the recovery time will be useful after active treatment is done.

Skap · 06/08/2019 11:11

I typed a long post last night and lost it :(
Brassica Nail damage aswell on top of all the other things this throws at you

Minx that's a shock! MX in two weeks as well, bad news as it is the old NHS does some things very swiftly. It seems like we might be having surgery around the same time.
21 teenagers Shock are you some kind of guide leader?

WTF99 what an ordeal, I really hope it pays off and the cap works.

I have my big appointment tomorrow when I will get a detailed plan. I intend to ask whether a MX would be more beneficial than a lumpectomy. The BC nurse rang me to say I am HER2+ though I don't know the full implications.
I have slept two nights ( apart from normal bladder interruptions) and feel better for it.

WTF99 · 06/08/2019 19:52

I have felt really well today on the first dose of taxotere. This isn't going to last is it?....I have a sense of impending doom with muscles and bone pain waiting around the corner and my nails dropping off but I'm just so happy not to be feeling sick.

Hoping for good things and swift news for all those awaiting updates/plans

Wombat22 · 06/08/2019 20:12

Hello everyone

I haven't been on the threads for a while. It's always a shame to see so many new posters find themselves here.

TQ I'm sorry to see that you have had such a rough time, but glad you are managing at home Glitterball

I've popped on in case beerandpopcorn returns.

In Dec 2017, I was diagnosed with lung cancer. The cancer was in my upper right lobe. In Jan 18, I had surgery to remove the lobe and some nodes were taken from my chest for testing. Fortunately, the nodes were clear. I did not need any chemo or radiotherapy. Scans in Sept/Oct 18 showed my lungs to be clear of cancer. I will be checked again this Sept/Oct.

I just wanted to say that there can be positive outcomes beer. Feel free to ask any questions if you need to.
Best of luck Thanks

Sending positive vibes and gentle hugs to any that need them.

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