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Cancer support thread 91 - don’t borrow tomorrow’s worries

991 replies

LemonDrizzle10 · 27/10/2023 07:39

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weegiemum · 04/12/2023 21:35

Getting nervous. My post-lumpectomy appointment is on Thursday and I've been having really loaded dreams with my consultant telling me I have cancer. Which I might. But I don't know do I? Really worried now, I've been having appointments and reviews every second week since September and I'm now really fed up with the whole thing!

TopOfTheCliff · 04/12/2023 23:22

Poor @weegiemum it’s been a very long time to wait. But at least you will have a definitive answer at last, and even if it’s cancer there will be a plan to treat. Stay present while you wait and try not to imagine the worst. You can’t control dreams they are doing the worry work for you! I hope Thursday comes quickly.

@Florabritannica if we make it earlyish I can come before I go to see DM. It would be lovely to see you again. PM me!

Tilllly · 04/12/2023 23:25

@weegiemum
Keeping everything crossed for you

SierraSapphire · 05/12/2023 06:56

Also my leaflets advised me against doing any heavy work for the first few weeks like ironing or vacuuming but said that after a couple of weeks I should be able to lift small children. Good to know what the medical profession thinks are the key activities for women

That's terrible, I rarely do any of those things, but then DD noticed that the leaflet I got from the hospital after my hysterectomy, said that my periods should come back within six weeks, so I don't take those leaflets very seriously! (I am still waiting by the way, do you think I should contact them? 😂)

Good luck @weegiemum, I sometimes get it in my head that my cancer has come back, but it hasn't so far (touch wood though I am not superstitious or at least I wasn't before I got cancer!) it's normal to be anxious around appointments and scans.

tam23 · 05/12/2023 08:12

@weegiemum Those dreams must be disturbing, but they are a sign that you are processing what is happening to you, which you need to be able to. I developed PTSD, as I shut down and didn’t process and didn’t dream at all for months. Therapy has helped though and I’m almost comforted by the fact I’m having nightmares now! Good luck for Thursday, I’ll be thinking of you.

@Florabritannica Those leaflets annoyed me too. My whole experience has been like being in the 1950s! No advice on whether I’d be able to continue with a high level demanding job during various parts of treatment it was always ‘up to me’, but plenty of advice on housework and childcare. My children are grown up and I have a cleaner! I hope it all goes well for you. I had no issues from my WLE, but do have a visible scar and dent, as it was in an awkward place. Lymph node surgery left me with some nerve issues, but they are still improving.

Florabritannica · 05/12/2023 08:25

Thanks @tam23 ! I do feel uneasy with the patriarchal takeover of breast cancer: hair and breasts are so integral to what society values in women and there is an extent to which the high profile of the disease is underpinned by this sense of tragedy that women are losing what makes them relevant.
Also I took against my surgeon at the very first appointment when she started talking about ‘ladies’.
Losing my hair has been traumatic, but I’d be quite happy with a double mastectomy. I’ve always hated my breasts and now they’re trying to kill me.

SewingBees · 05/12/2023 09:47

@Florabritannica I feel the same about my breasts. Too big too soon getting me the sort of attention I hated at too young an age. Then when I finally got to use them for their designated purpose they were a bit shit and breastfeeding was a nightmare. And now they're doing a damn fine job of finishing me off.

SewingBees · 05/12/2023 09:49

@KentishMama Good luck for today xx

EachandEveryone · 05/12/2023 11:10

I spoke to occy health yesterday who are supposed to be very good supporting nurses going back. She told me bluntly I can’t go back with a picc line in and has referred me to OH doctor. Is that true do you think? Why did my consultant not let me have it out for 6 months I’ve been going weekly to get it flushed and it’s not been used. My sick pay ends this month and I feel sick id planned to go back very slowly phased return January (until my sickness entitlement goes up before the next drama) I’m worried now

tam23 · 05/12/2023 15:15

@Florabritannica Totally with you on all of the above. I have felt regularly patronised and disempowered by the doctors treating me. The staff on the ground though, have been kind, considerate and compassionate, without being patronising. An interesting difference! I hope your surgery goes well and recovery is good. I’ll be thinking of you.

isaxx · 05/12/2023 16:47

@Florabritannica I hear you with the wanting to disappear in a puff of smoke. I have had that feeling regularly over the course of this rollercoaster. Thankfully, those feelings are not constant.

As to WLE, I haven't had that, but I understand (from others here, and those I know offline) that the cosmetic results are often ok. As to recovery, I agree with others (and I had mastectomy and DIEP all in one) that the worst is the lymphnode removal/biopsy. That said, not everyone has major issues with that either. I had terrible cording though, still partly visible now over 5 months on and some arm swelling ongoing. The cording does get better though even if you are unlucky enough to have it as bad as me. I have regained full range of motion and it has faded to a great extent, despite starting off with multiple cords running all the way down to my hand and being really restricted in my movements for ages. I can now swim, reach things high up, etc. Still have the swelling situation though.

On that, if you get any swelling at all in your arm, my advice is to not wait but to get checked asap, as prophylactic temporary sleeve wearing, self-massage and exercise can stop it in its tracks or, worse case scenario, stop it from ever progressing to a really visible stage. I have it more or less under control at the moment. It is not obvious to others and am looking into options for LVA surgery, but have to wait for my next review in January to discuss any further options. A really dreaded consequence though of surgery and time consuming to stop from progressing. I do get really down about it, but am trying to focus on what might be able to be done about it rather than on the fact that its there. Plus there are plenty of other things to be down about to distract from this one!

Saw thyroid surgeon today. He is one of those 'It is entirely up to you' doctors, even when you need strong steering from an expert. He kept repeating to me the risk stats and then saying it was up to me to decide whether to have surgery or not. I am going away for X-mas anyway, so will not set a date until I get back, but I think I am heading towards cancer risk-reduction over avoiding the risk of bad consequences (terrified of possible effect on voice - as much as I like typing on this forum, real life speaking is hard to beat!).

Tilllly · 05/12/2023 21:43

@isaxx

Drives me mad that
I don't know what to do, I'm not the one who went to med school!!

Tilllly · 05/12/2023 21:45

I've got to stop reading the "is it a virus or more serious" threads
They're driving me potty
I want to invite them to see what some of you are going thru then see if they go to the ED with a cold!

Octopus45 · 05/12/2023 21:59

Hi ladies, I am going to go quiet for a while cause I'm in a stable position at the moment and posting doesn't feel appropriate, when I don't have any real advice for any of you and cannot really contribute to this thread in any meaningful way. I wish all of you the very best and want to thank you all for your support whilst I've been positing. Sending a virtual bouquet to each of you, I've never been able to work out how to do the emoji.

KefaloniaKid · 06/12/2023 09:22

@Octopus45 you've said it better than I could! I'm also in the same position at the moment and didn't want to just up sticks and leave without saying farewell. I've really appreciated the warmth and support offered by everyone on this thread. It is the very best of Mumsnet. Wishing everyone good luck wherever you are on the rollercoaster and hope that 2024 brings us all good health and happy times.

tam23 · 06/12/2023 09:56

Can I have a moan, please? I’m tired and sore and crying alot and feel like I’ll never be me again. Also, my son collapsed 100 miles away yesterday and I couldn’t be there for him. Just feeling sorry for myself today.

LuciaPillson · 06/12/2023 10:24

@tam23 Big hugs to you and your son.

TwigTheWonderKid · 06/12/2023 11:09

Oh @tam23 you poor thing. Can't tell you that you'll ever feel like "you" again but you will definitely feel better than you are now.

I hope your son's ok. It's so utterly rubbish when we can't be there for them . I don't even feel like I'm here for my 14 yo DS2, who is obviously still at home.

tam23 · 06/12/2023 13:24

@LuciaPillson @TwigTheWonderKid Thank you so much for your kind words. They really helped.

LuciaPillson · 06/12/2023 14:14

Hi, for those of you who knew mowly77 we are remembering her over on the stage IV thread she started, as it's her funeral happening now

https://www.mumsnet.com/talk/life_limiting_illness/stage-iv-cancer-incurable-roll-up-roll-up-this-thread-is-for-you?page=21

Tilllly · 06/12/2023 20:58

@tam23
Oh I'm sorry
I had a meltdown a couple of days ago

How is your son?

tam23 · 06/12/2023 21:08

@Tilllly Thanks for your reply. He’s got a concussion and a couple of nasty bumps on his head. Should be OK though. Just feel like I’m having a run of it at the moment - radiotherapy hit me like a ton of bricks yesterday and struggling on letrozole and it’s all just got a bit on top of me. I’m usually the one who holds everyone together and I can’t do it at the moment. Thanks so much for your post. How are you doing?

HerbalRefreshmentt · 06/12/2023 21:23

Is anyone on exemestane and can tell me if the joint and muscle pain gets better? I'm four weeks in and I don't know if I can live like this if it continues. Doesn't help being sick with this nasty cold and unable to get out and walk, but it feels like it kicked up a notch this last week.

I did well on letrozole for 2.5 years, so I imagine if this doesn't get better I can perhaps swap back but man,someone give me some hope here. I've also lost a few kilos as I don't want to eat at all

Tilllly · 06/12/2023 21:35

That's a relief @tam23 but they're still your baby, aren't they

I made myself a sausage sandwich with white bread and brown sauce. I nibbled on it until I felt better. Then I made a long long list of things to do. Then I sat and watched loads of The house of Elliott, under a quilt
Then the next morning, I made myself work thru my list - it had all sorts on, send bday card, pluck eyebrows, put dark wash on, wash cat mats, do shopping list, cut fingernails etc etc even v small things.
It pulled me out of my slump - might work for you

Tilllly · 06/12/2023 21:41

@HerbalRefreshmentt
Bastard side effects
I'm on anastrozole so can't tell you, but I do remember at 6 weeks telling my breast care nurse I couldn't stand the joint and muscle pain anymore and she told me to hang on a bit longer, and they reduced very suddenly shortly after
Maybe ring MacMillan?

My eldest is a doctor, (ED, not oncology) but he's said to me a few times

  1. There's no need to suffer pain or discomfort
  2. Side effects are a price to pay but at 8 weeks, generally we look at something else

What I hate about my current situation, is I'm having drugs to combat the side-effects of the drugs I'm having for the side-effects... it infuriates me.

Keep going a bit longer, drink lots of water and get plenty of fruit and veg - help your body do its thing.